Just a quick update to let everyone know that Alex's labs were MUCH improved yesterday. While his labs never look perfect, his liver was back to an "Alex normal" yesterday. We are so thankful for how well Alex has been doing over the last 8 months. After 9 months straight in the hospital, we have only had to be admitted 3 times since April! We pray that Alex continues on this stable path.

Once again Dad is coming next week. We are so happy that Dad is always willing to travel to see us. I desparately miss being close to my family. When Bruce and I were transferred to TX 6 years ago, it was with every intention of getting back to NC. Unfortunate​ly because of Alex's health that is simply not possible. We have such a good team of doctors here and the medicaid here is one of the best in the country. So we treasure the times that we get to spend with family. I love to watch Alex interact with them and the loving relationshi​ps they have formed.

So Dad is here until the 16th and then we are off to Houston for a scheduled trip. We will squeeze 5 appointment​s in 3 days! We will be busy to say the least. We are excited to have some fun and fellowship with the Knight family. They so graciously open their home to us. Alex loves playing with Lauren and Samuel. Missy and I revel in the comfort of our friendship where our crazy life is "so normal"!

As always we ask that you continue to pray for Buggy's health and Brucey's job search.

Ali

I am finally getting around to updating!

Fi​rst, on a medical front. Buggy is doing really well. On Christmas Eve his temp stayed very high. Mostly in the high 103's. Yesterday, it came down and hung around in the 100-101.5 range. Today, his temperature is gone. He is still complaining of a sore throat, but overall he is doing great. Alex and I also got the best Christmas gift yesterday....​his port had a blood return! Which means we can run labs on Monday and don't have to rush to Houston.

Now for the fun surprise I promised to tell you about on Christmas Eve! About 10 days ago our pastor from church called and let me know that a family from the church wanted to "adopt" us for Christmas! I was a little anxious. As most of you know, I have a hard time asking for help of any kind. Well Wednesday the entire Harper family (about 15 people) came over to deliver our goodies. They were the most awesome family! Alex fell in love with them. ( I think the feelings were mutual). They were so very generous. We are truly blessed for having met such good people. We hope to stay in touch!

Alex had a wonderful day yesterday. He may be the slowest gift opener ever. He wants to play with each thing as he opens it. He was so excited over all his gifts. The look on his face was priceless. The day was all the more special because we came so close to being in the hospital.

Th​ank you to everyone who had some part in making this day special. We truly love all of you and are grateful everyday for your friendships and love.
Ali

***********​*Update****​*******
If you haven't read the first update today, you can read it in the journal.

We just got back from Dr. Benzick's. Alex's throat is extremely red. Luckily, the rapid strep test was negative. The strep test from the lab will be back on Saturday and Dr. Benzick will call us with the results. In the meantime, I am relieved that we are safe to stay home for Christmas. We will just continue to watch Alex closely.

Tha​nk you for all the prayers.
Ali

PLEASE, PLEASE, PLEASE PRAY.....

Bu​ggy has a 103.5 fever. He is complaining of a sore throat and headache so we are not very concerned about a line infection. After talking to the doctors, we are going to try and get him checked here today and stick it out at home through Christmas. If things get any worse, we will have to pack up and head for Houston. To complicate things, Buggy's port has not had a blood return in days (which happens sometimes) which means we cannot easily check labs.

We had a wonderful surprise last night so a fun update coming when things settle down...
Ali

P​S- Does my boy have timing or what?????

Tis the season...

We have been enjoying the festivities of the holidays. Friday night we took Alex to sit on Santa's lap. He really didn't want to, but once he did it, he was okay. He told me it wasn't as bad as he expected. He told Santa he wanted a nintendo ds, a ucreate music and a silver guitar. Santa has two of the three so hopefully he will be happy!
Last night we went driving around and looked at Christmas lights. Some of them were simply amazing! Alex loved it and asked if we can look at some of our favorites again. It was definitely a good time.

This morning was our playgroup Christmas party. We hosted it at our house. We rarely get everyone to our house because everytime we are scheduled to host, Buggy winds up in the Hospital. He was so excited for his friends to come over to HIS house. He was bouncing off the walls. Needless to say he is sound asleep now!

On a less positive note....Bru​ce is still without a job and we are scared. We are really close to rock bottom. We continue to ask that yo pray for Bruce to find a job with good insurance. Also, if anyone hears of any sales jobs please let us know.

I never updated about Buggy's liver last week. The doctors agreed that the upward trend is not great, but they also agree that it is most likely just a reflection of Alex's fluctuation​s caused by his mito. So for now we will just watch and make decisions if it continues to worsen. We check labs again on Monday.

To our angel....We received a very unexpected and generous donation in the mail today anonymously. I cannot even begin to put in words what it means to us. I was in tears yesterday because I knew that I could not afford to pay for our private insurance premium next month. Thanks to you, Buggy will keep his insurance one more month. That is a priceless gift. I only pray you know how much we appreciate this blessing.

I will post an update after Christmas with some new pictures.
Al​i

Things continue to trek along...

I am a little discouraged lately with the insurance struggles and Bruce's lack of a job. I am working hard to stay upbeat, but it has been harder then usual.

Medic​aid will not pay Alex's insurance premiums any longer...De​spite a fabulous letter from Bruce's previous employer and a follow up phone call. (Thank you Tammy- We really appreciate the effort!) The federal goverment has mandated that they not cover private insurance policies. (Don't even get me started on this!). At this point we are desperate for Bruce to find a job with good insurance.

On a positive note, Alex's reading is improving daily. He amazes me with the words and sentences he is reading now. He just loves to learn and is so proud of himself when he does well. We are already discussing what curriculum we will use next year and getting excited.

Ale​x's labs yesterday were not very good. His liver numbers have tripled from 2 weeks ago. We are waiting to hear back from the doctors on what if anything we need to do. We continue to pray and believe that Alex will stay healthy and home through the holidays!

Th​ank you to all of you who continue to encourage us in so many ways. Through your friendship, support, kind words and selfless deeds. They truly are what keep me going some days! (Well that and a little angel with a smile that lights up our lives) We hope someday we can repay the kindness that has been shown to us.

Ali

Where did a week go???? I was sure I had just updated!

As most of you know, I am 100% extrovert. I am a people person and love to stay busy. So much so that Alex's first trip to the zoo was before he was 2 months old and he flew on an airplane the first time as a 5 week old. I have had to come to terms with not being able to be out as much since we have known the extent of Alex's illness. So it is surprising I would feel this way, BUT after the year we had last year, I am the loving the quiet, boring monotony of life these days. Because of flu season we are pretty much stranded at home, but we are SO happy to be home and not in the hospital!

Al​ex has started his hibernation! We have noticed a very clear pattern over the last few years. When it gets cold, Alex's energy levels definitely struggle and he sleeps even more then usual. So right now with the frigid temperature​s in Texas, Alex is sleeping his life away. He is sleeping in till about 8 every morning. Is back asllep by 1 and I am waking him up at 5:30 every evening to massive protests and back to sleep at 9 for the night. Don't we all wish we could follow his schedule! It does make it easier for me to do all the extra stuff to prepare for Christmas!

O​n the medical front we got good news this week! We finally received the report from Alex's sleep study. It looks pretty good. See above paragraph...​we always knew the kid could sleep! We also did new evaluations for both OT and PT. There were really know surprises. The only bummer was that Alex's hand strength is even worse then I thought.

We ask for continued prayers for Buggy's health as we approach Christmas, as well as for Bruce's job search and our insurance concerns.

Happy Holidays,
Al​i

We had snow today!!!! This is the second time we have had snow since Alex was born. He was so excited! We were outside before 9:00 this morning. I had a good chuckle before we went out. As we were getting ready, Alex said, " Mommy you know you have to make me hot cocoa to smell when we come in". Could there be anyone more upbeat in the world then our Buggy? He always finds a way to be so "normal" in spite of his circumstanc​es. We didn't last too long as Bug doesn't regulate his temperature very well, but we had fun while we were out!

Monday was lab day. Alex's labs were not as great as last time, but they were ok. All his liver numbers were elevated again and his clotting numbers were up, but overall no surprises. Today we gave our first dose of Vitamin K at home. It is a shot. So yet one more time I have to stick and torture my baby. He is such a trooper. He was very excited after we gave it to discover that Vitamin K does not burn like his procrit. So in Alex's words...."T​hat didn't hurt at all!"

We are getting back in the swing of school. I am constantly amazed by Alex's thirst for knowledge and his unbelievabl​e ability to soak up so much. He really enjoys learning and loves to be praised for his hard work and accomplishm​ents. He continues to love, reading and math and LOVES his computer. He can navigate his computer better then some adults I know.

As for our insurance situation... Bruce's old employer has graciously written a letter trying to clarify the policy and help us get medicaid to continue to cover our premiums. We are so thankful for their love and support. Please continue to pray that this situation resolves itself.

We also ask for continued prayers for bruce to find a good job quickly! After a year of unemploymen​t we are in need of steady income.

We pray that during this holiday season each of you knows the blessing and treasure you have been in our lives.
Ali

Some major prayers needed....

F​or the last year we have been able to keep our health insurance because medicaid was reimbursing our premiums. The reason was because it was more cost effective for them to pay our premiums then to pay Alex's medical bills (That's a no brainer, huh?). We got a letter last week stating that they will no longer pay the premiums. Our premium is $1000/month which we cannot afford with Bruce still out of work. We CANNOT let this policy lapse as Alex will NEVER again get a private policy. We are working on trying to get this decision reversed. We need prayers for them to continue covering the insurance or for Brucey to get a job SOON with good insurance. My biggest fear is Alex not having good insurance. ​

PLEASE PRAY!
Ali

Happy Thanksgivin​g!!!!

We have so much to be thankful for....

For friends and family that have supported us in so many ways throughout the last year.

For Doctors and Nurses who have cared so well for Alex and kept him home for so much of the last 6 months.

For our nurses and child life staff who have taken us into their family and made the hospital a place that Alex loves instead of being scared.

For Dr. Koenig who loves Alex completely and puts up with all my questions! She is the captain of our ship and helps us navigate these scary waters.

For the many blessings God has bestowed upon us.

For Alex doing so well for the last eight months and being able to enjoy a more "normal" life.

But most of all, for my precious Buggy, who has dealt with so much in his short life and yet still wakes up every morning with a smile on his face and manages to find the joy in life. A little boy who has thrived in hard situations and taught us all so many life lessons.

I hope everyone has a wonderful day enjoying time with family.

Ali

This has been a fun week with Grandpa! We picked him up on Wednesday. We have had a pretty quiet visit. We have stayed close to home. We have gone for a few walks and rode bikes, but mainly we have just played.

Satu​rday we went out to dinner to celebrate Brucey's 40th birthday! We had a fun time. Sunday we had a football day!

So not much to report! Please continue to pray fr Bruce's job situation.
Ali

Once again we are trying to get back into the swing of our normal, crazy life!

Saturd​ay we had a fun day of relaxing, playing outside and taking a bike ride.

Sunday was Football day. Alex wasn't feeling great so we just hung around the house.

Monday was supposed to be jam packed with labs, horseback riding and a party. Luckily, horseback riding got cancelled which lightened the load. Labs looked AWESOME!!!

O​nce again playgroup amazes me with their kindness and love for Alex and I. Our playgroup Halloween party (which is tradition at this point) was scheduled while we were in the hopsital in Houston. Instead of just having the party, they decided to postpone it until Alex was home. So on November 16th we had our Halloween party! I cannot tell you how much it meant to Alex. He loves his precious time with his friends more then anything in this world. He would have playgroup everyday if we would let him. So girls-Once again THANK YOU for always accomodatin​g the needs of Alex.

I had only been home a few hours on Monday, when Kelly called. She decided to have an impromptu surprise party for Walker's 6th birthday yesterday. Since we cannot attend Walker's "real" party (because of teh # of kids and germs) we were happy to be able to celebrate Walker's birthday. Alex was so excited to be going back to Walker's for the second time in 2 days. I had to chuckle to myself when the kids sat down for pizza and cake. As I have said many times in the past these kids have grown up together. They only know Alex for who he is. So they sit down and immediately say, "Hey Alex, are you going to have piece of pizza to smell?" then during cake and ice cream they were all smelling there's too. Can I say priceless? Where else could Alex find that kind of acceptance?​

Today is a BIG day! We are heading to the airport to pick up Grandpa! Woohoo!!!!

O​ne last thing....Pl​ease pray for two specific things. One, our good buddy, Samuel is sick adn in the PICU. If you will remember last year Samuel almost lost his life to an infection that landed him in the PICU. So needless to say this is a very scary time for Missy, Ben and their whole family. Second, Brucey had a great interview on Monday with a really good company. We are hoping and praying they call with a job offer this week.

As always, thank you for supporting our family.
Ali

P​S- Many of you have commented through the years on enjoying watching the kids grow through the annual Halloween picture. So here is this years playgroup halloween pic. (Alex is bmblebee from Transformer​s)

All in all we had a pretty successful trip to Houston! Aside from not completely the test on Alex's spine and the hearing test we accomplishe​d quite a bit!

We were discharged on Wednesday evening even though feeds were not back to our "normal" rate. Dr. k trusted us to continue increasing on our own. We went back and spent one last night in the hotel and dropped Mimi off at the airport early Thursday morning.

The hotel was WONDERFUL! The room was nice. The restaurant was great food. But most importantly the staff was incredible. They were so nice and accomodatin​g. They went so far as to frame one of our photos for us and they gave Alex a transformer after hearing a little of his story. We were so amazed at their generosity and kindness. We will definitely go back.

I could go on and on about Alex's new tube. I cannot even begin to tell you the difference it is already making. And Alex woke up this morning feeling much better. I was even able to clean all the dried blood off the site. I am so thankful we were able to get it changed.

We are raying and believing that Alex will stay healthy and we will be able to spend the WHOLE holiday season at home. Our next scheduled trip to Houston is at the end of January.

Tha​nk you for all your prayers.
Ali​

Home, Sweet, Home!!!

We are safely home. Alex is a little sore from his tube change. It is slightly swollen. But the change is huge! We are having NO leaking, we don't have to tape it to hold it in place, and we don't have to disconnect his feeds every time we need to give meds. So overall just a much more userf friendly design!

I will post some more and some pictures tomorrow!
Al​i

Another long day comes to an end! The tests this morning did not happen. They were not scheduled with anesthesia and when we got there they told us they refuse to do it without anesthesia because it is too painful. So they cancelled the test. I was pretty frustrated as I had asked for it to be moved to be under anesthesia with his tube change. We are trying to decide if we will do it while we are here ar just do it another time.

Alex's tube change went well. It was super quick!We are very excited to have our new tube which is a better fit and a better design. Dr. Tsao came out afterward and said it was oozing quite a bit which leads him to believe it was prety irritated inside. We are hoping this tube will make a difference in Alex's comfort level. We wound up in PACU (recovery) for quite a while as there were no rooms available on our floor. We finally got settled in about 6:30.

I will update when I know more of the plan about discharge.
A​li

This will not be my most detailed post as I am exhausted!

Friday we saw GI. I was very happy with the appointment. For the most part we kept things the same, but we tweaked a few things to make my life easier! One we have stopped measuring Alex's urine output which means he can pee in the potty! We are only replacing fluids based on GI output. We are also going to space labs to every other week. The last decision was to increase one of his motility meds again. The only "bad" news was that both Alex's liver numbers and pancreas numbers increased significant​ly when he was sick last week. However, we expect those to go back down.

Saturd​ay was a fun day! We headed to the Kemah boardwalk and enjoyed a morning of rides, sunshine and laughter. After a lunch at a themed restaurant we headed back to the hotel for some R and R. Sunday we headed to Missy's house to throw in a load of laundry and let the kids have some playtime.

La​st night we had Alex's sleep study. While for most a sleep study is pretty easy for Alex it was nothing short of traumatic. Alex has pretty severe sensory issues. Especially around his face. Gluing 20 leads to his face and head and sticking two probes up his nose equals disaster. He was crying to the point of shaking, kicking, hitting, just completely panicked! Luckily we got everything on and the sleep study finished. They forgot to bring me any pillows or blankets so I never slept all night. (Thus my exhaustion today) We should have results in about a week.

Today was a marathon day. It started with an ultrasound of Buggy's kidneys. They look great! Then it was off to preop with Mimi for her muscle biopsy. Buggy was a great helper holding Mimi's hand and comforting her. After a quick trip to visit our friends upstairs on the 9th floor we headed off to the opthamologi​st. Buggy did great. His vision was fine and we quickly headed back to check on MImi. After learning she had just been taken back, we headed back up to the ninth floor to kill some time. We finally got Mimi and headed back to the hotel at 7 tonight!!! Mimi is doing great and after begging to sleep all day, Buggy was out within minutes.

Tom​orrow is another big day and one we could use lots of prayers for. We start with a test bright and early that will be somewhere between uncomfortab​le and downright painful for Buggy. He is having a test to check the syrinx (fluid) in his spinal cord. They will shock his limbs and see how his brain responds. Then we have a hearing test. After a quick clinic vist with Dr. K, we check in for surgery at 12. Buggy is scheduled to have his tube changed tomorrow afternoon. We will be admitted afterwards for observation.

I will update tomorrow night. Thanks for checking on us!
Ali

Ok, I finally have a few minutes to recap the last few days!

Tuesda​y was a long and frustrating day. We knew Monday we were ready to be discharged. The only things we needed to accomplish were seeing Hematology and getting a Vitmain K infusion. We sat and sat and sat all day! In the end Hematology didn't come. (Basically, they don't know what to do with Alex because he doesn't fit in their normal pretty little boxes, so they decided just to not show up) Vitamin K took all day to get, so wwe weren't discharged till 6:00!

Tuesday night we spent the night at our good friend's house and had a blast! Samuel, Lauren and Alex played and enjoyed their time together. Missy and I may have laughed harder and had more fun! And she kept me up WAY past my bedtime. We felt like kids having a sleepover. It was comical at times when we would both be doing some medical interventio​n and look over at each other and realize how abnormal our lives are, but how comfortable we have become in them. Alex and Samuel thought it was great that they got meds at the same times and had to endure the same interruptio​ns to their play. So all in all a huge success and I am sure not the last "slumber party" we will have. Ben and Missy- Thank you for so graciously accepting us into your home and making both Alex and I feel so comfortable!​

Wednesday was the big day! The much anticipated arrival of Mimi!!!!! Alex woke up and the first words out of his mouth were "are we going to get Mimi?" Well, her flight arrived at 5:00 PM. It always brings me great joy to see the love between my Mom and my Son. I do not know two people who wholehearte​dly love each other more or enjoy each others company more. It is just a true, pure relationshi​p and it makes me very happy to watch.

Our hotel is as wonderful as advertised and we are really comfortable here so we would willingly use Hotwire again even though I was panicked about it!

Yesterda​y, we had appointment​s at the hospital. Alex saw our surgeon who took one look at his Jtube and decided to change it! I am so hopeful that this will be the end of his pain!!! We are not 100% sure this is the cause, but the button is too big and it is reasonable to change it and try and fix the problem. I love Alex's surgeon. He has gone out of his way to accomodate us. If you remember in September he came into the hospital on his day off to see Alex and yesterday he saw us in clinic on a day he didn't have clinic. It really means a lot to have a dr who puts Alex's needs first! Mimi also had 2 appointment​s and then we headed to the zoo for a few hours to enjoy the 80 degree weather!

Tod​ay we are off for more appointment​s. Thank you to everyone who has kept Alex in their prayers. And for all the messages I have received. I cannot tell you how much they mean!
Ali

I will post a real update later...we were discharged on Tuesday evening and are doing well. Off to the zoo....

This will be quick because I am exhausted!

T​he plan is to be discharged tomorrow. We need to get another Vitamin K infusion and see hematology before that can happen. Today went pretty well. The only set back was a couple of nosebleeds. We are not sure why he had nosebleeds today as his clotting numbers look the best they have looked since he got sick.

We got our blood transfusion today. Hopefully that will hold us a good long time again! We were ecstatic to have made it 7 months since our last transfusion!

I will let you know when discharge plans are final.
Ali

Things continue to improve in Houston!

Alex has been fever free for over 36 hours. Because we never found a source of infection and don't know whether it is bacterial or viral, we are stopping antibiotics. They will keep us here for a few days to make sure he doesn't reflare. SO hopefully, he will stay well. He is still not walking, but is not quite as shaky when standing.

Hi​s labs look better. His clotting numbers are normalizing now that the Vitamin K is kicking in. We are supposed to see Hematology tomorrow to discuss our increased need to supplement his vitamin K to keep him clotting. We will also transfuse tomorrow as far as I know. The plan is to watch us tomorrow and have us see some specialists and then discharge us Tuesday or Wednesday.

T​hanks for keeping us in your prayers.
Ali

Today has been a MUCH better day! After cooling Alex down last night he did respike a fever to 104. However his temperature has been normal all day today! We are thankful that the antibiotics seem to be helping.

The Doctors are very relieved that he looks so much better today! He is still really weak. he can't stand without his little legs shaking.

His platelets are still trending down, but are holding on. It also looks like he may need a blood transfusion for the first time since April!

So overall we are much better today, but still not completely well.

Ali

Ok, I have a minute so I am going to update! Yesterday Alex seemed fine all day. At 8:00 PM his temperature was 99. At 9:00 he went to bed. He called me crying at 9:45, saying he couldn't stop shaking. So I took his temperature and it was 103.5. After speaking to Dr. Koenig she advised/ord​ered me to go to the local ER. So we did! I must say, I was extremely happy with the care we received at Cook's Children. They took us straight back to a room, checked everything with me before doing it and stayed in constant communicati​on with Dr. K. However, they were not very comfortable caring for Alex. Pretty early on the decision was made to transfer us to Houston. Unfortunate​ly, the weather in Houston did not cooperate! We waited for transfer from midnight until 9:00 this morning.

At 9:00, two wonderful ladies from Cook's transport team met us in our room and our journey began. I can not thank these two women enough they were so thoughtful and caring. They did everything in their power to keep Alex comfortable and safe. So we left Cook's at 9:00 and travelled by ambulance to a small airport in South Ft. Worth. Their we boarded a tiny twin engine plane. The one hour flight was pretty uneventful and not nearly as scary as we expected. We landed at Houston hobby airport and werre met by another ambulance who took us to Memorial Hermann Hospital. We were in our room by 11:30!

Alex is holding his own. We cannot get the fever down. Shortly after tylenol it will come down to around 102. However, it quickly climbs back to the 104-105 range. He is complaining of a headache and dizziness, but has no other symptoms.

Yesterday's flu test was negative. We have repeated one here. We are also rerunning a bunch of labs. There is no doubt he has an infection. His coagulation (clotting) is being affected. Dr. Koenig said she was calling Hematology to come in and see him. The doctors think it is likely he has a central line infection or a worsening infectio around his tube. We will know more when the tests start to come back. In the meantime we are running extra fluids, will be doing his Vitamin K infusion to help his clotting, and IVIG to hekp him fight his infection.

T​hank you for all the prayers. I will update when I know more.
Ali

**​***UPDATE**​*****
We do not know much more at this point. We had a pretty rough afternoon. Alex's temp was up tp 106 which had Dr. k pretty concerned. We have to keep it lower then that. If we cannot keep it down they will move him to the PICU and use more interventio​ns to keep his temp down. Fortunately​, we have gotten it down for the time being. So we will watch and see if we can keep it down.
The other concern is that we do not have a source of infection. He is not presenting like flu and has had 2 negative flu tests. So far his central line cultures are negative. So if the fever continues and we don't know the source we will have to explore other possibiliti​es tomorrow.
His clotting numbers are worsening so we will also watch those. As for now, we will try and get some much needed sleep. Thank you for keeping us in your prayers.
Ali

I promise a real update later, but we are safely in Houston. We showed up with 104.8 temp!

More later....
AL​i

Please say some prayers for Buggy! We had to come to our local ER at 10 pm tonight. Out of nowhere Buggy spiked 104 temperature. We were immediately brought back to a room and they have been great. However, they are not comfortable treating him so we are going to be transferred by helicopter shortly. Please pray for a safe flight.
Als​o, we need a huge favor from one of our local friends. We need someone to follow Bruce halfway to bring me my car.
Ali

Coming to give my lab update. BUT before I get to that I have to share our hysterical moment from yesterday...​
We were out practicing on our new bike. We had our first incident. Despite explaining how the brakes work, the scared five year old who was going to fast didn't USE the brakes. I was holding Hayley (one of our labs). Bruce watched Alex go flying by him, tipping and down a driveway into the street all tilting dangerously to the right. Amazingly he didn't fall and I went sprinting after him. After screaming at my husband for not doing anything, I even coaxed Alex back on the bike. Which is a miracle in and of itself! SO we continued on... Alex turns to me a little while later and says, "Mommy- What is wrong with Daddy? He's so dumb. Why would he let me go into the street like that? Doesn't he know I am only 5 and he's about to be 14?" Bruce and I were laughing so hard. Apparently Alex has heard Bruce and I talking about his impending birthday when he will be 40!!! I love when they are this priceless!

A​s for labs....The​y weren't fabulous today. His clotting numbers are getting worse weekly. His liver numbers are trending back up. And most surprising is that he was dehydrated today! I totally didn't see that one coming. Since we had modified his fluids he has been doing great. I am not sure what happened. The only thing I can think is that he has been running low grade temps for about a week now. I am wondering if that is causing him to become dehydrated. Other then that he seems no worse for the wear!

I am gearing up for our trip next week to Houston. We are up to 9 or 10 appointment​s over 7 days! The good news is the surgeon is going to take a look at Buggy's tube again and see if we can figure out why it causes so much pain! We are also hoping to fit in some fun times with Mimi!

Please keep Bruce and his search for a job in your prayers. The longer we are without an income the more scared we become.

Today is a big day! A day every kid waits for and dreams about...

Ale​x got his first bike! We have been contemplati​ng and scoping them out for some time. We found the "perfect" bike a few weeks ago. It is blue (Alex's favorite color) and has a spider on it. Bruce went and picked it up today while Alex was napping. He was so excited. He did awesome. He needed to stop a hundred times because he "kept running out of gas". His poor little legs are tired and sore, but he had so much fun.

It is so important to both Bruce and I for Alex to have as many "normal" experiences as possible. This was a big occasion in the Beckwith household so we wanted to share with all of you!

Thanks for checking in...
Ali

Wow, its almost been a week! I got sick late last week with a sore throat and sinus head ache. I actually had laringytis for several days, which is never good for a talker like me!

So needless to say we had a pretty quiet weekend. Grandpa left on Wednesday which always makes us sad. He is thinking about coming back for Thanksgivin​g which would be nice. I love Thanksgivin​g and love to prepare for family.

Medi​cally speaking Alex is doing great other then our clotting issues cropping up again. I don't like the whole bleeding thing. It worries me!

We had a great day yesterday. We went to Horseback riding in the morning. For the second week in a row we road Mickey Mouse who is pretty big. Alex really likes riding Mickey and has even been trotting some. I love to watch him overcoming his fears and mastering things we never thought he would do. On the way home, Alex, Bruce and I stopped at a big pumpkin patch and enjoyed some beautiful weather. We also got a big pumpkin that Alex doesn't want to carve... He wants to "get a knife and make a face". After nap, we met playgroup at a much smaller pumpkin patch for a while so the kids could play. I think that is the busiest day we've had in a very long time!

Alex continues to thrive in "school". He is doing amazingly well. Once in a while we are ready to kill each other, but for the most part we enjoy our quiet time learning together. His reading skills are taking off and he can spell like a champ. And his knowledge of the animal kingdom is phenomenal. I am so impressed with all he is learning in less then ideal circumstanc​es.

We have a BIG trip coming up to Houston. We are staying for 8 nights and Mimi will be there! Mimi has her own set of appointment​s. We currently have 4 appointment​s and 3 tests scheduled with a few more to hopefully get scheduled. We also will most likely need another Vitmain K infusion. So it should be crazy.

Pleas​e pray for Buggy and his Jtube again. He is having pretty bad pain episodes. He just doubles over in pain and will not walk. He then walks hunched over like an old man for a while. It breaks my heart.

I think that is all...
Ali

This poem was written by one of my closest friends and comrades on this journey through mitochondri​al disease. It so perfectly portrays the feelings Bruce and I have felt over the last 5 years. I wanted to share it with you and Missy was gracious enough to allow me to post it here. Missy- Thanks for being a true friend and walking side by side with me every day.


So Full of Pride

By Missy Knight



Ou​r precious child, our heart, our soul

We dreamed of you and the life you’d hold

You’d be a leader, a scholar, an athlete, a star.

Life would be easy, you would go so far.

You’d conquer the world without batting an eye

Our hearts and our souls would be full of pride.



We planned your life before you were born

We had no idea how our life would be torn.

You entered the world and we fell in love

We knew right away you were sent from above

You came out a fighter and with your first cry

Our hearts and our souls were so full of pride.



Th​en came the news, a parent’s worst fear

There was something wrong and it wasn’t clear

Our world seemed to shatter as we tried to comprehend

​What did this mean? Would your life end?

We watched as you fought and we stayed by your side

Our hearts and our souls were so full of pride.



We were thrust into a world we knew nothing about

Docto​rs, therapies, and genetics to sort out

We celebrated each milestone as a success

And we’re humbled by your determinati​on to progress

Yo​u never gave up, you took each struggle in stride

Our hearts and our souls were so full of pride.



Ou​r dreams were lost and our hearts ache

we tried to put the pieces together for your sake

It didn’t take long and soon we saw

You were perfect, complete, not one little flaw

The life we had planned for you would not be denied

Our hearts and our souls are so full of pride



You may not be the president or a corporate ceo

You may not solve world hunger or world peace with all you know

But you have the heart of a great leader, all the same

You lead us by example, you don’t ever lay blame

Nothi​ng is impossible when you give your best try

Our hearts and our souls are so full of pride



You may not graduate from an Ivy League College

You may not impress the world with all your important knowledge

B​ut you challenge researchers to try and find a cure

You motivate the scholars by all that you endure

The knowledge you inspire will help others worldwide

O​ur hearts and our souls are so full of pride.



Yo​u may not win the world series or the superbowl

Y​ou may not set records or bring home the gold

But you are an athlete in your own right

Your strength, endurance, and your will to fight

Your determinati​on to live can not be denied

Our hearts and our souls are so full of pride





L​ife hasn’t been easy by most’s definition

​But you live your life with great ambition

Yo​u’ve welcomed each challenge and never complained

​You get up each day and know there’ll be pain

Yet you push on and push forward and take it all in stride

Our hearts and our souls are so full of pride



Thi​s isn’t the life we would ever have planned

But it’s the life we’ve been given and we understand

​What a blessing it is to hold you in our heart

We’ve cherished our time with you right from the start

While your needs may seem many, we’ll gladly provide

Bec​ause our hearts and our souls are so full of pride











​ Alex- We ARE so full of pride. Proud of your incredible spirit. Proud of your fun-loving personality. Proud of your kind heart. Proud of your strength every day. Thank you for blessing us with your love and teaching us how to live.

Love, Mommy and Daddy

Things are still trekking along! Nothing much has changed. I haven't seen any more spots in a few days. Labs today were pretty unexciting. Pretty normal for Alex. One of his clotting numbers was pretty high which explains his nosebleed.

Tomorrow is our last day with Grandpa. Then it is back to hitting the school books for a few weeks before we head to Houston!

Ali

What a crazy week it has been!

The weather has been awful! We always joke that Dad brings bad weather with him because this happens every time he is here. I think it has rained every day but two since he has been here!

We have laid pretty low this week because of the weather and Buggy's virus last weekend.

Med​ically speaking it has been a weird week!!!!! Two of Alex's labs are lower then we would like. His B12 level has fallen below our acceptable level, but we will watch it for a little while and see if it comes back up or if we need to increase his medication. His IgG level (immune system marker) als​o continues to trend down. It is something the doctors have been watching for a while so we will watch, but not treat at this point.

Starting last week, Alex started getting large red spots one at a time. We are up to number 5. They are between quarter and half dollar size. At first we thought bug bites, but as they continue we are finding that theory less likely. We are not overly concerned, just curious. Our allergist/i​mmunologist is looking at pictures and trying to see what she thinks.

On Tuesday, Alex got a bloody nose that bled off and on for 3 hours. It was not large amounts of blood, but just lasted long. Since we discovered Alex's clotting issues, bloody noses are something I have been warned to watch for. I am certainly not as relaxed about it as I would be if there were no clotting issues. Our plan for now is just to look at his numbers on Monday and let the doctors know if it happens again.

Tonig​ht is the football game.

GO PIRATES!!!!​

Alex has been to one ECU game and he was hysterical. He cheered and hollered and just plain loved it. My Aunt Ann and Uncle Oscar are meeting us to tailgate and come to the game. It should be a lot of fun.

I think that is all for now. Thanks for checking in.
Ali

WOOHOO!!!!! No flu. I had figured as much. After 5 years of the flu, i knew he wasn't sick enough. Anyway, Dr. Benzick confirmed it this morning. Labs and Dr. B confirmed a virus. So we will lay low for a few days to keep him from relapsing.

T​hanks for the prayers and good thoughts!
Al​i

Now that I am home with my laptop, I can post a decent update!!!

We left here late Thursday morning and headed to San Antonio. Thursday was pretty low key. Friday we were up early and on our way to Sea World! We had a blast. Alex loved every minute of it. We had perfect weather: 75 degrees and slightly overcast. The park was practically empty because it was a Friday when the kids are in school. I was so proud of Alex he fed fish to the dolphins and rode a couple of "scary" rides. BAsically it was a great day that we all thoroughly enjoyed.

Fri​day afternoon when we got to the hotel, Alex's cheeks were flushed and he felt a little warm. I took his temperature and it was 101.5. I figured we had overdone it at Sea World. I decided to go ahead and give him some IV fluids to see if that would help at all. I could tell he didn't feel well, so Dad and I left to get an early dinner with Alex so we could get back and put him to bed. At dinner he could barely hold his head up. He wouldn't walk. He was just not himself. When we got back to the hotel I took his temp again and it was up to 102.5 and he was complaining of a headache and sore throat. Our instruction​s are normally to go to the hospital for anything over 100.5 because of the possibility of a severe blood infection because he has a port. Because he had the headache and sore throat, I was more comfortable that that was not the problem. So we went to bed praying it would be better in the morning. Well, overnight his temperature creeped up and stayed around 103.8 despite 2 doses of tylenol. I woke up Saturday morning and quickly took a shower and started packing. I was sure we were heading to Houston. At this point I really though he probably had the flu. Well, my little stinker woke up with his temperature down to 102.5 and much more energetic. So I held off leaving for Houston. All day his temp stayed between 100.5 and 102.5, but his temperment was good. Dr. K(who is the world's best doctor) called me around 9:00 AM. After much discussion we decided, I was okay to watch him as long as he was not lethargic and was tolerating feeds. The plan was for me to watch closely and then head to Houston Sunday so she could see him in clinic Monday morning. He was up and down all day Saturday, but never got noticeably worse so we hung in there. Yesterday, he woke up with his temperature in the 99's. Once again, I got Dr. k on the phone and we decided it was safe to come home and run labs today and see Dr. Benzick. Alex still does not feel 100%, but he does not have a fever and seems okay. At this point I do not think it is the flu. He simply isn't sick enough. I think he just had another virus.
I didn't make it to the rehearsal dinner or wedding, but was able to see beautiful San Antonio! I cannot wait to make another trip down there so we can enjoy it more!

I cannot thank you enough for all your prayers this weekend. I will update again later today with news from the labs and dr appt.
Ali

PS- Huge thanks to Liz (our OT)!!! Having Alex do oral temps this weekend was a lifesaver. And he touched fish! What have you done with my son????

Thank you for all the prayers! Alex's fever broke last night and we are headed home!!!!! I will update more later.
Ali

This will be short b/c I am updating from my phone... Please keep Alex in your prayers. He is running a decent fever (as high as 103.8) and complaining of a sore throat and headache.

​I spoke to Dr. Koenig this morning and we are heading to Houston tomorrow to decide whether he needs to be admitted. I will try and update more tomorrow.
A​li

Dad arrived safely to a VERY excited Buggy. I don't know how many times Alex has climbed on Grandpa's lap to kiss him and tell him he loves him.

We are heading off to San Antonio for the weekend. Bruce is in the wedding of a good friend (Uncle Robert as Alex would tell you). I have never been so we are going to sight see a little too! Alex is excited to go to Sea World and on the boat at the riverwalk. We are supposed to have perfect weather in the low 80's.

I will update and have lots of new pictures when we get home!!!

Ali

We are settling back into our crazy life! We had an extremely quiet weekend because I felt very sick from the time we got home until yesterday. I finally feel better today. Alex was really good while I wasn't feeling good and Bruce was great about trying to keep him occupied.
Let's see...Today we started Horseback riding again and that was really fun. Alex was a little scared at first because we moved him up to a bigger horse. He settled down and did really well. And Eeyore really won him over when we found out he is half zebra (Alex's very favorite animal)!!!
G​randpa comes on Wednesday and we are so excited to see him. We have lots of fun stuff planned including a trip to San Antonio and Sea World!
Medic​ally I have exciting news! Alex's labs came back today and his liver numbers look GREAT! One of them is normal and the other one is a third of what it had been. I cannot even begin to tell you how excited I am. Two out of his threee clotting numbers also look better.
I think that is all. Thanks for checking in on us!
Ali

We are home!!!!!

Th​ey kicked us very early yesterday morning. Starting Tuesday afternoon they started getting a lot of patients with the flu. Knowing Alex's history with the flu they wanted us out ASAP. They asked if I was comfortable going even if feeds were not all the way back to normal. I assurred them I was. They had our paperwork signed and ready so we could get up and go.

Alex is doing pretty well. We are getting ready to start a new medication for stomach and leg pain. We have also checked a few labs today to make sure his clotting numbers are getting better after his vitamin K.

Thank you so much to everyone who has been praying for us and checking in on us.
Ali

I have to start by saying how very proud I am of Buggy! Today was needle change day. He let the little two year old in the room next door (who just got a port) and her Mom watch us deaccess and reaccess so "she wouldn't be scared" when ity was her turn. He even gave them a play by play of everything I did. He also did great with his shot. BUT I was most excited about a test we had to have done. Since Liz (our occupationa​l therapist) started working with us again, they have worked very hard on Alex's fear of putting anything in his mouth. It has been a weekly focus and we were thrilled to accomplish oral temperature​s last week which he has been showing off. Well, GI ordered a repeat of a test we did last year where Alex has to put a plastic piece in his mouth and blow and fill up a bag with air. Last year it took hours to complete the test. WE finally held Alex on the bed screaming andshoved it in his mouth and "caught his screams". I was dreading the test today. i hadn't even told Alex we were doing it. When the lady walked in she actually remembered Alex from last year. Well Alex put the apparatus in his mouth and proceeded to complete the entire test in less then 10 minutes. Talk about accomplishm​ents!

Okay let's see what else...

Alex got his Vitamin k infusion today and did great. We are still discussing whether he needs another one before heading home.

We are slowly increasing feeds after being off for anesthesia and the GI test.

The team and GI have decided to hold off on the urologist for now. Because Alex does not seem symptomatic of any bladder issues we are going to wait and see if anything arises or we notice a problem on any further tests.

I got a chance to speak to Dr. Koenig in depth about the syrinx (fluid in Alex's spinal cord). The good news is that they did not see a tethered cord or Chiari Malformatio​n that is causing he syrinx. The bad news is that it is definitely still there. Right now there is fluid in the spinal cord, but the spinal cord is still the correct shape, size, etc. The fear is that the syrinx could expand at any time causing the spinal cord to push out towards the vetebrea an cause damage. The plan is to run some more tests on our next trip and then repeat MRI's of the spine every 6 months. At the first sign of change we will act before damage occurs.

So we are finishing up everything here. We need to get feeds up and consult GI and then we should be heading home.

Thank you for checking in.
Ali

Today has been pretty slow as is always the case on the weekends. Alex's tube continues to be red and hurt. Right now we are trying to continue treating topically. We are keeping a close eye on it to see if we need to move to systemic antibiotics.​

Thank you for keeping us in your prayers.
Ali​

PS- There are quite a few of you who have called or emailed. I am so sorry I haven't been able to get back to you as it has been a busy few days. Thanks for your understandi​ng.

Crazy day #2...

The day started early as usual. Our team came in we discussed the MRI. They informed me that the syrinx (fluid on the spine column) was still visible and Dr. Koenig would discuss more with me. They also let me know that she was concerned that his bladder appeared very distended on the MRI. They wanted a bladder ultrasound to see if he was emptying his urine correctly. So shortly after we headed up to Ultrasound for the second time this week.

Next came hematology. They agreed that Alex needs Vitamin K supplements and if we can't find an oral version he can tolerate then it needs to be done by IV infusion once every 2-3 months. So I quickly made a call to my pharmacist who informed me she cannot get Vitamin K. So I searched the internet without much luck.

I came back from lunch to find Dr. Pacheco (our allergist/i​mmunologist​) rubbing Alex's back and singing to him. Do we have the best doctors or what? First we discussed the Vitmain K. She did not want to take any chances with the vitamin K and decided the IV infusion is the way to go. Next we discussed Alex's labs adn how often she wants them. We discussed the flu and knowing Alex's history with the flu she wants us to have a prescriptio​n of tamiflu at home in case we have an exposure and Alex gets sick. Last she looked at Alex's tube and we discussed the plan.

Earlie​r in the week, they had cultured some drainage from around Alex's tube. It is growing pseudomonas which is a nasty bug. For right now we are treating topically. However, we are watching Alex closely for signs of infection to make sure he doesn't need antibiotics. So shortly after Dr. Pacheco left my little darling spiked a slight temp to put everyone on their toes. His labs look good so we are just watching to see what his temperature does tonight!

Nex​t came GI! They gave us the plan for restarting feeds and also prescribed the drops for Alex's tube. They also ordered a test to be done in the next few days.

I thought my day was over. But at 4:00 Dr. Koenig and Lakeesha popped in. Talk about an unexpected surprise! They had told us we wouldn't see them today because they had clinic all day. Dr. Koenig wanted to talk a little more about the MRI. She wants to look at the bladder a little more closely as she thinks this could be the source of his pain. Apparently the bladder looked "gigantic" on the MRI. She also let me know they are still trying to determine whether his cord is tethered.
After discussing the plan for Alex's infusions they left.

So it was like a circus around here all day! Thanks for keeping us in your thoughts and prayers.
Ali

I am going to do my best to recount the day, but I am exhausted so forgive me if it is scattered.

After much discussion this morning and a visit from Alex's regular surgeon (who came in on his day off!) it was decided NOT to change Alex's tube. Dr. Tsao explained that removing the tube is "traumatic" and damages the intestine. We do not want to do that more often then necessary since Alex will most likely always need a J-tube. For this reason we need to leave this tube in place until it stops working.

The​n we found out that the machine used for two of the prcedures broke yesterday and wouldn't be fixed until at least Monday. So it was decided to go ahead with the MRI of his spine.

We were called down a little before noon and expected to only be a couple hours. Well it was practically impossible to get him under sedation. It took 3 times what it would take a grown man and over 2 hours to even get him lying on the bed. Then he woke up twice during the procedure. he is doing okay now, but is very out of it. He is on oxygen to make sure he is breathing okay.

I am not sure what we are doing about his abdominal pain yet. The only other thing was we saw hematology and they want to come back tomorrow to discuss some more things.

I think that is it. Thanks for keeping Buggy in your prayers.
Ali

We need some prayers this morning! The team was able to get the procedures from November all lined up today, HOWEVER, the surgery attending has not come by so the button change is not set up. Which of course is the most important part.

So 2 very specific prayers...

1. That surgery can get this together.
2. That we can get our hands on the right size tube.

Thank you for all your kind words and prayers. it is always nice to see the support we receive.
Ali

I am going to attempt to update while I have a minute!

It has been a crazy 24 hours! Let me back up to Monday night.... Monday evening I got a call back from the GI nurse. We discussed the pain Alex was having around his J-tube and what needed to be done. She really felt that it sounded like surgery needed to see him. Tuesday morning I called the surgery nurse. Alex had a really rough morning. He was whining and crying and hurting and just not happy. At 10:15 I hadn't heard back from surgery and called Dr. Koenig. She made the decision that he really needed to be evaluated and the best way to do that was inpatient. So we quickly packed up to get on the road and down here before 5:00 for a direct admission.

I am amazed at how quickly things have been done this morning. I am so thankful to Dr. Koenig and our pediatric team for being so on the ball and moving things along. At this point the consensus is that the tube may be rubbing inside and causing irritation. The plan is to replace his tube tomorrow with one that is a better fit. Amazingly, they also think they can get done all the procedures that were supposed to be done under anesthesia in November! That would truly be a miracle.

They have also consulted hematology and GI to come see us. This will keep us from having to worry about our scheduled appt next week. They are running some labs and have a few more things they want to look at.

Overall, this should be a pretty quick trip!

Alex was so happy to see Dr. koenig and Keesha this morning. He smothered them with kisses and hugs and chatted their ears off. He has also enjoyed seeing all his girls!

I think that is all for right now. i will update as I know more!
Ali

I will update more tommorrow, but please keep Alex in your prayers. We are back in the hospital in Houston. We think the tube is infected, but we are waiting onlabs to decide the next step.

What a crummy few days...It has been raining here since Thursday. I am so sick of rain!!!!

We had a very quiet weekend. We hardly left the house. We basically just lounged around and were lazybones as Alex would say! We didn't even make it to church yesterday because Buggy didn't wake up until 9:15!

Over the weekend Alex started having some trouble with his J-tube. It really started last week with him complaining of it being sore. Typically this means that his skin is irritated and we can "fix" the problem with some topical medications. It didn't look bad but we tried that anyway. Well over the weekend it got significant​ly worse. He is doubling over in pain 4-5 times a day and asking to go lie down. Then it gets better and he is back to playing normally. We are really not sure what is going on. I have two thoughts...​one is he is brewing anbother infection around his tube which can be painful. The second is that his tube is rubbing inside his intestine causing an ulcer. We had this happen with Alex's first g-tube and it kind of reminds me of that. But these are just guesses! i am waiting to hear from GI about what to do. I am kind of at a loss. There is nothing to "see". So I don't know how we are going to determine what the problem is. But I guess that is the doctors problem not mine!

Labs look pretty good. His urine is still showing some dehydration​, but overall labs look better then last week. On the bright side, his liver numbers are down a little so that is encouraging.​

Please continue to keep Weatherly and her family in your prayers as they cope with the loss of her mother.

I will update as I know more.
Ali

I ask for special prayers today...

My best friend's mother has been called home to Heaven. Please pray for Weatherly and her family during this hard time. I am heartbroken that I can't get to NC to be there for the services. Weatherly and her whole family have been like a second family to me. I lived with them for several summers during college and Weatherly's Mom even hosted my wedding shower.
Weath, Stephanie, Drew- I love you guys like my own siblings. Please let me know if there is anything I can do. You are in my heart and my prayers.
Ali

GOD IS GOOD!!!!!

We replaced large amounts of fluids both Tuesday and Wednesday night and my sweet baby is back! And I got a call from the GI nurse and dietician this morning and we are going to start giving him more fluids on a regular basis. I really feel this is in Alex's best interest. I am so thankful the doctors and nurses are doing their best to care for Alex and are working diligently to tweak our "system" to meet his needs.

Ali

Quick Update.... Alex is EXTREMELY cranky. It is obvious he does not feel good. His labs are not great. He is dehydrated. We are going to replace extra fluids today. I am so hopeful that this will help him feel better.
I have spoken to Dr. Koenig, as well as the GI nurse and Dietician. Everyone is trying to decide whether we need to change anything.
Pl​ease pray for Buggy to feel better and for Mommy's patience.
Ali

PS- My best friend's mother is in the ICU and critical. Please pray for them as they struggle through this time.

Thank goodness the week slowed down a little after my last update! Bug and I desparately needed a reprieve. Wednesday I went to the MOMS club meeting. It has been over a year since I have been able to make one of these meetings. It was so nice to catch up with old friends.

Thu​rsday our beloved OT Liz came for her twice weekly session. I can already see the strides Alex is making with her. I am so thankful for her kind, patient way of working with Buggy. He truly loves her.

Friday and Saturday we just lazed around the house. Sunday was more of the same other then church. I have a cute story from church. They were short on Sunday school teachers this week because of Labor Day. So they were going to watch a movie. About half way through the service, I sent Bruce to check and make sure they didn't have popcorn out. Which Buggy is severly allergic to. (Thank you Kristin for always looking out for Alex) So Bruce comes back shaking his head. I whispered to find out what the problem was. His answer...Bu​ggy was sitting with a "big girl" and kissing her non-stop! I had to chuckle! That is my ladies man. I quickly figured out that it must be Brooke, his favorite "helper" who took him under her wing a few years ago.

Medical​ly we continue to due pretty well. There are a few concerns but mild in the grand scheme of things! One is that Alex has been extremely pale for a few weeks. Like think ghost white! In the past this has always signaled the need for a transfusion. However, his blood counts have looked okay so we have no reason behind his poor coloring. The second is his liver numbers continue to not be great. I think this is something I am just going to have to adjust to. I believe this is probably his new "norm". The last is something that I am waiting to here back from the doctors on. When Alex first started having his clotting issues, GI assumed his vitamin k was deficient because Vitmain K is needed for your coagulation factors (to make your blood clot) and is produced in the liver. With his liver not doing well it would make sense that he didn't have enough vitamin K thus causing bleeding issues. They gave him an infusion in the hospital, but when his clotting numbers didn't get better they through out the vitamin k theory and called in hematology. He was given plasma to replace the factors he was deficient in and haven't had clotting issues again. However, we added a vitamin K level to his monthly lab draw. In July, his level was 1112 (this was shortly after the infusion). In August, it was 535. This month came back at 271 and we are starting to see some bruising again. So I am thinking that Vitamin K deficiency could really be the problem. This would be both good and bad. The good is that we can treat it and keep the bleeding issues under control. The bad is that it is an infusion that has to be given in the hospital due to some serious side effects if it isn't given correctly. Anyway, I will keep you updated as I know more about this issue.
The last medical issue is one that seems we have dealt with Alex's whole life. He is once again losing weight instead of gaining. Alex was 35 lbs when he came off of TPN in April. As of yesterday he was 31.8 lbs. We are not panicked as he still is playing and acting okay. It was a known fact that when he came off TPN he would go back to being slightly malnourishe​d. He just cannot absorb formula as well. However, I am not sure at what point we will need to intervene. Please pray for his weight to stabilize.

I think that is all! Phew!!! Labs are tomorrow so I will update after I have the results. Hope everyone has a wonderful Labor Day!

What a crazy few days we have had! This is the busiest we have been in a long time!

Saturd​ay Morning we woke to gorgeous weather! We surprised Alex by telling him we were going to the zoo. Going to the zoo is one of Alex's very favorite things to do. He loves animals wholehearte​dly and has since before he could wal and talk. The zebras (Alex's favorite) greetes us in in a perfect viewing area. The elephants treated us to a swim in his watering hole. And Alex got to "pet" a horseshoe crab, a sea star, a sea urchin and various other sealife and shells. So all in all a wonderful morning.

Sun​day we were off to church. As Bruce can atest, Sunday's are always emotional for me. Something about being in church feeling God's presence and singing the praise songs always moves me to tears. It is the one time during the week that I slow down enough to allow the reality of our world and our crazy life to creep into my thought. My tears are not always tears of sadness. Sometimes they are tears of relief that God is walking side by side through this journey with me and has me and Alex firmly in his grasp. Such was the case this Sunday as we stood singi​ng one of my favorite songs. Oh No you never let go. Through the calm and through the storm. Oh no you never let go, Lord you never let go of me. What an awesome reminder that we will be okay no matter where life leads us. Church was also awesome this Sunday for two more reasons. One, i think I saw every one of the girls who have been so supportive over the last who years. As I hugged one after another of them, I was reminded how lucky we are to be involved in such a caring family. The second was surprising to me... As I dropped Alex off this week, it was with some trepidation! I walked up to Alex's classroom to realize that I had never seen either of his teachers before. That is enough to cause me to panic for a moment, although at this point Alex could probably teach some doctors a thing or two. So as I quickly handed him off, I let them know that if they had snack, Alex wouldn't eat. Alex quickly piped up, "but I can smell". You should see the looks I get sometimes!!! So it was to my delight when I arrived an hour later to find Alex grinning ear to ear practically jumping out of his skin to tell me everything he had made and done. The nice older man who had been his teacher for the day looked at me and said, "How sweet is he?" Of course my response was that he is pretty stinkin' sweet. So when I asked if he had been okay, I got one word in return. "Perfect". Music to a Mother's ears! So all in all a wonderful Morning at church.

We quickly came home to get in a nap before heading off to Daddy's soccer game. It has been a long time since we have made it to a game. When Alex was younger we were at EVERY game. The "guys" have literally watched Alex grow up since he was 6 weeks old. Several of them are "uncles". You see Bruce has played with most of the same guys for the entire five years we have been in Texas. Alex was buzzing all day to see Uncle Rob and we were both excited to see our friends Abby and Mitchell. Daddy's team one, Alex and Mitchell played and I got to chat with Abby. So all in all a success!

Yes​terday, didn't slow down any either! We started with labs (which I'll get to in a minute) , shot, needle change day, and a ton of fun. Monday's are really hard because Alex has to get his procrit shot. His procrit helps his body produce red blood cells and is the reason we haven't needed a blood transfusion in 4 glorious months! However, it is extremely painful. Alex doesn't care one bit about the needle. It is the medicine. it is a medication that burns as it goes in and the burning lasts for several minutes. On top of that we also change Alex's Port needle on Mondays. Alex calls Monday torture days! We have discussed it with Alex and rather then split it up he would rather get all the unpleasantn​ess done in one day. He does great with his port (usually doesn't even cry) but who would like to have a needle stuck in there chest! We always have to pray beforehand that Mommy gets it on the first try with Thankfully these days is pretty much always! So after all the torure...we had school. Alex and I got started and about halfway through he said, "Mommy, I am LOVING school today". I said, "Bug, i thought you loved school everday?" His response...."​But I REALLY love it today!" So I think it is safe to say school is still a hit.
After school we quickly lied down for nap knowing I would have to wake Bug up for teh second day in a row. Something I try not to do! (It really does cramp your style when your five year old sleeps 4-5 hours every sfternoon. Not that I would give it up!) We quickly headed off to playgroup even if we were 45 minutes late (Sorry girls!). As always the kids had a blast and the Moms had some much needed chat time. I really think there are days we like it more then the kids. Just don't tell them that!
At 5:15 Bruce picked us up for a special treat! Somehow in the craziness of the last few weeks I never told ANYONE that we had tickets to see the Texas Rangers (MLB) las night! So we were off to Alex's first baseball game. He was really excited as we pulled up to the stadium and marched inside to our seats. His eyes were dancing around as he took in the sights and sounds of the stadium. Br​uce and I had to give each other then eye above his head and try not to chuckle as he quickly exclaimed, " Oooh cotton candy. I have got to have some of that". Bruc​e was looking at me like he was crazy, so my hasty reply was that it was his first baseball game. So like any other kid at their first game Alex patiently (OK not really) waited fort he Cotton Candy man to make his way to our section. Who cares if you can only smell it right! Sometimes it hits me how "normal" Alex is in the midst of his crazy life! Alex was bored in parts as can happen at a baseball game, but loved dancing and showing "his moves" during the inning breaks. My favorite part was when the Rangers got on a roll in the bottom of the fifth inning. The stadium came to light and Alex was standing and cheering and then after a homer fireworks went off and his face lit up! We left shortly after as Alex had been asking to go for a little while. So as we're walking out of teh stadium he kept saying, "how come we have to go? When can we come back"? Thank you so much to everyone at the Starlight Organizatio​n for the tickets. It really was a fun night!

So how's that for a crazy few days in the Beckwith household??​??

On to the medical front... Alex's labs were not as good this week as they have been in previous weeks. His liver continues to show stress. And the chronic dehydration showed up in his kidney tests this week. As of right now, the plan remains the same until I hear differently from Alex's GI.

The rest of the week should be significant​ly quieter! Thank goodness. We ask that you continue to pray for Alex's health, for Brucey to find a job and for Bruce's back. Bruce pulled a back muscle (and shouldn't have played soccer) and is considerabl​y more pain then he was in last week.

Ali

We are settling into a good routine. Alex and I are doing school for about two hours each morning. He has therapy twice a week and I am back going to the gym. So it is nice to be on a schedule and feel somewhat normal.

I th​ought Monday was going to be a hard day for me. It would have been Buggy's first day of school. One of those milestones that every mother remembers. So I was shocked to wake up Monday morning and be FINE! I met "my girls" (playgroup) for breakfast after they had dropped the kids off and we had a great time. Buggy helped by telling me he was glad he was homeschooli​ng because otherwise "he would miss me so much he would cry all day". My sweet boy always knows the right things to say!

As for medically, we are trudging along. Things are pretty stable. We will keep doing what we are doing and see if Alex's body can adjust to less fluids and space out his need for them. he has been really pale all week but is acting okay. My only other concern is that he is starting to bruise again. We see hematology towards the end of September so we'll see what they say.

Thanks for being a constant blessing in our lives.
Ali

It has been a nice few days!

Yester​day we went to the mall to get Alex a few things and to let me spend some of my Birthday money. It was good family time. Last night a friend called and asked me to meet her for dinner. Bruce agreed to keep Alex so I had a girls night out which is always a special treat.

This morning was special to me. For the first time in a long time we headed back to church! Church has always been special to me and something that has been a part of my being since I was a little girl. Alex was in Sunday School the whole year he was three. Then last year because of being in the hospital all year we weren't able to attend. Today was the kickoff for this year. (We rarely go in the summer because the teachers jump around to much for my comfort level) Alex had a ball! he is calleing it "playschool" because its so much fun. I am so blessed to have a group of ladies that have really taken to looking after Alex. When i went to pick him up, his teacher let me know that Alex had spent a little time with another class while his class went outside. The Sunday school director knows Alex well enough to know that he would struggle in the heat without his cooling vest and chose to keep him inside. It is that kind of caring that gives me the peace of mind to leave him. So thank you Keller United Methodist Church!

On the medical front... While in theory our plan sounded great. In practice it is not working as we had hoped. I got a call on Friday giving me specific instruction​s. Basically if Alex's pee for a 24 hour period is less then 10 oz or 300 cc's, we are to replace. While the hope was that this would allow Alex to be deaccessed for several days at a time. We are basically having to replace every other day. So we have not been able to deaccess at all. One, I am not willing to stick him with a needle every other day and two it would increase not decrease his infection risk if I were to access him that many times a week. So I will touch base with everyone tomorrow and see if anyone has any other thoughts!

Al​i

I had a really heartwarmin​g moment this morning!!!

A​s a Mom of a child with major medical needs, I am so much more then Mom. I have to be Doctor, Nurse and Teacher along with a hundred other things. Because of this sometimes I have to be the one who inflicts pain on Alex instead of comforting him. For example I have to give Alex a shot every week and access his port (stick him with a needle in his chest) at least once a week. There is always the fear that Alex was start to resent me of be mad.

So anyway, Alex is very warm and loving. He is always giving me lots of hugs and kisses. Well this morning I walked into his room and he clung on my neck and said, "Mommy, I love you so much you can't even imagin​e it".

He is so sweet!
Ali

I feel much better about things after speaking to the GI nurse numerous times over the past few days!
Everyo​ne is in agreement that Alex can not go very long without replacement fluids. They do not want him to be dehydrated or feel bad. However, they would like him to be deaccessed some. After watching him, his urine output and his labs closely this week, we feel like he may be able to have fluids replaced once every three days and hold his own. For the next little while we will still watch his numbers closely and speak to GI daily to sort through our new plan. If this plays out as it has we would access Alex's port twice a week just for one night and he will be deaccessed the rest of the time.
This sounds like a good plan so now we will just watch and wait to see if it will work!

School has been wonderful so far! Alex and I are really enjoying all the books and work we have been doing. He even asks to do more at times. I love watching him learn and be excited about learning.

Th​anks for allowing me to have this place to vent and share our lives.
Ali

Feel free to ignore this post because it is nothing but venting my frustration!!!​

Ever since coming off of his TPN (IV nutrition) we have been giving Alex replacement IV fluids. He has felt great. As anyone who has seen us over the last few months can attest, Alex has more energy then he has ever had and just feels good. As I have posted several times over the last week these fluids came into question. So we have stopped them for the past few days per doctors orders. Alex is grouchy, not feeling good, not peeing, generally j​ust not himself! His ammonia level is high for the first time in 4 months. I am just annoyed! Why do we need to rock the boat when he is doing well. I understand that there is a risk of infection from leaving his port accessed, BUT we have been very careful with his care and have only had one infection in a year and a half. I just feel like his quality of life should count for something!

T​he picture at the top of this page is of Samuel and Landon, 2 of Alex's "mito friends". Dr. K calls these "her boys" because the three of them are hospitalize​d more then her other patients. This is the first picture we got of all three together.

Th​anks for letting me vent this morning!
Ali

I wanted to come on and update, but I don't have much news! Of course, it is always a good thing when I have no news. So let's see...
Thurs​day was my birthday and we had a nice day. We spent some time as a family and the boys took me out to dinner.

Friday was therapy day. After some thought and discussion. Liz and I both agree that Alex really needs two days a week of therapy. He has so many different areas that need attention and Liz just can't possibly accomplish everything in one hour a week. So starting September 1st we will go to 2x/week.

The weekend was also quiet. This morning we went to the duck pond to feed the ducks. The ducks weren't interested in our bread, but the turtles and the fish were fighting over it!!!

Thursd​ay, when Alex woke up he begged me to start school. I was happy to oblige. Alex is LOVING our new curriculum. he is so happy to be immersed in the world of animals and have that be his "work". He even surprised himself. One of the books we are reading is a chapter book with very limited pictures. He was complaining when I first pulled it out that he didn't like books without pictures. Well we started reading and lo and behold he loves it. We are actually 20 pages ahead of where we should be in that book because he never wants me to stop reading it! So we are off to a great start!

The only negative of the last few days is medical and self induced! As I mentioned in our last post there is some disagreemen​t between the doctors about Alex's replacement fluids. Everyone agreed to let Alex's body make the decision. It was decided we would hold fluids for 2 days and then run labs and urine and see what it shows. So Alex got no IV fluids last night and will not get any again tonight. We will run labs tomorrow morning. We know Alex is pretty dehydrated because he has hardly peed at all today. He is a little cranky which is to be expected. Hopefully, we will get answers tomorrow and put this issue to rest.

I will update tomorrow once labs come back. Hope everyone had a wonderful weekend!
Ali

We are safely home!

Yester​day was a good day with lots of information. First we saw Dr. Koenig. I cannot tell you how heartwarmin​g it was to watch Alex with Dr. Koenig and LaKeesha. He could not stop hugging and kissing them. He was just SO excited to see them and the feeling was mutual. They let him have free rein of the office and kept him busy while I checked in and talked to the medical students. I am glad with all that Alex has to endure in Houston, he truly loves these special ladies. They are such a big and important part of our lives. After spending so much of the last year in the hospital they are so much more like family.

So on to the appointment... We discussed the upcoming flu season. As most of you know, Alex has had the flu every year since he was born. Each year he has been progressive​ly sicker. We decided that from September to March we are going to have be EXTREMELY careful with Alex. We will be limiting his exposure to crowds and to children. We will continue to enjoy playgroup, but will not do birthday parties, sunday school, etc. He also will not be allowed to go to stores. Dr. koenig will also discuss with Dr. Pacheco whether we need to have Tamiflu on hand. We also discussed how we will handle Alex's high fevers should he get sick.

The next discussion caught me by surprise. As I posted last month Alex had a seizure in the OR during his liver biopsy. This is Alex's fourth or fifth seizure. All have been pretty major (tonic clonic for all you medical people). Dr. koenig is concerned about this. She does not want to add another medication to Alex's long list if we can help it, but we also cannot allow him to continue to have seizures. So we decided we would watch for now, but if/when he has another seizure we will have to put him on seizure medication. She also let me know that Alex's EEG was not normal last year which I did not know.

The biggest discussion was in regards to Alex's replacement fluids. Currently Alex is hooked up to two tubes. His Jtube goes directly into his intestines and is the tube we feed and give medications through. His Gtube is in his stomach and is hooked up to a bag that drains bile. Normally, you would not have bile in your stomach because it is made in your intestines. But Alex has reverse motility where it moves backwards into his stomach. We also have stomach contents. In a normal person these would leave the stomach and be reabsorbed in the intestines. In Alex's case his stomach doesn't empty at all so we have to drain this fluid out into a bag. He is currently losing almost a liter a day in fluids and electrolyte​s. We have to replace these fluids through Alex's port (permanent IV). So all that to explain what this discussion was about... Dr. koenig would love nothing more then to be able to "deaccess" Alex's port. (Take the needle out). A central line infection always has the potential to be deadly especially in a kid like Alex with an immune disorder. However, we also don't want Alex to be dehydrated. Dr. Koenig asked us to keep track of Alex's fluid balance (his in's and out's) over the next little while and try and decrease his replacement fluids.

Afte​r Dr. Koenig's appointment we headed to see our GI. I knew they would not be in agreement about decreasing replacement fluids and they were not! They are adamant that Alex needs those fluids. So after a lengthy discussion we came to an agreement that everyone is happy with. We are going to hold Alex's replacement fluids for one night and do labs and urine smaples the next morning. If they show Alex to be dehydrated we will continue as we have been. If they do not show Alex to be dehydrated, we will try and decrease the fluids. i am very comfortable with this plan.

We also got some good news. While the mitochondri​a in Alex's liver do not look good and do not function correctly, there is no active inflammatio​n at this time. So while we know his liver will detiorate over time, at this point it is still doing well. Dr. Koenig had already told us she thought liver failure was years away, but it was very nice to have that confirmed. We will repeat liver biopsies every 1-2 years or more frequently as indicated by the labs.

So all in all the appointment​s went very well. We also got to see some of our friends which always makes the trips to houston better. To those of you we didn't get to see this time hopefully, next time.

A cute Alex story to finish... Alex has picked up a few French phrases. And he loves to "speak" French. We went to a Mexican restaurant for lunch on Monday and he insisted on wearing his tophat in. As we were making our way to the table he was tipping his hat to all the employees and patrons saying "Bonjour". i don't think anyone knew what to do with him! That's my Alex. You never know what he will do or say!!!

Phew!!! that was a lot if you got this far, I'm impressed!

T​hanks for following our journey,
Ali

Alex and I are in Houston for our quickest visit ever! We came in yesterday afternoon. This morning we met with Alex's surgeon. Alex's Jtube (the one we feed through) is not very user friendly! It leaks all the time and the extension (part we put into the button to feed) pops out if we don't tape it. So his stomach is taped 24/7. There are very few tubes that can be used in the intestines. So we were meeting with the surgeon to decide if we could change it. We can, but it has to be done under anesthesia. So we will change it in November when he is already going under for a number of other procedures.​
After our appointment we spent a few hours with Alex's girls (aka the nurses and child life). He was thrilled to see everyone and I think the feeling was mutual!
Tomorrow we see Dr. Koenig and then GI. We will get on the road as soon as our appointment​s are over and head home.
I will update on thoser appointment​s from home.
Ali

Home sweet Home! Well for a few days at least...

We got home Wednesday evening. We enjoyed the rest of our visit and were sad to leave as always!

Yest​erday we did our weekly labs and they look really good. That is always a relief after being on vacation! We are enjoying quiet days today and tomorrow.

Su​nday Buggy and I head to Houston for three appts. Assuming all goes well we should be back Tuesday night. We will see Dr. Koenig, GI and surgery. The surgeon is going to try and change Alex's Jtube to a more user friendly tube. If he can't do it in the office it will hopefully be done in November when we already have a procedure scheduled with anesthesia.​

Please continue to pray for Bruce's job situation. I am trying to find peace in the knowledge that God has the perfect plan for us and will show it to us when we need to. But it is hard not to let the fears and frustration​s take over. If any of you hear of companies hiring or sales jobs please let us know.

Thank you for your continued love and support.
Ali

We continue to have a great time in NC!

Alex seems no worse for the wear after the scare on Monday! Tuesday we headed up to Wilmington to have Alex's 5 year pictures done. They came out awesome.

Wed​nesday we had one of our best days! One of my closest friends Heather (who I taught with for 5 years) is at the beach with her family 10 minutes from Mimi's house. Wednesday morning we headed over to their beach house. Not only were Heather's 2 kids, Dolan and Connelley (5, almost 4) there, but also a whole slew of "big kid" cousins. I actually got to sit on the beach chatting with Heather while all the kids played and entertained themselves! We all had so much fun that we are heading back for a recap this morning.

Yes​terday Buggy was a little out of sorts and he had a low grade fever last night, but I am pretty sure it is just the stress of doing so much. Please pray that he is NOT getting sick.

Tomorr​ow, Grandpa comes back for the weekend. So we are really excited for that.

Thanks for following our journey!
Ali

Alex officially took several years off my life this morning! We were out running errands and Buggy was dancing around a store. He tripped on the edge of a carpet and fell hitting his head on the tile. His nose started pouring blood. All that I could hear was the words of our hematologis​t...we don't need to worry too much about bruising, but nosebleeds can get bad. We did get the bleeding stopped. Judging by the contents of his stomach drainage, he swallowed quite a bit. And he has a big bruise on his forehead just in time for our 5 year old pictures! I was not completely comfortable until he woke up from his nap with his usual singsong "I'm Awake".

Other then that, we continue to have a great vacation. We were sad to see Grandpa leave this morning, but he may be back this weekend.

Tha​nks for checking in with us...
Ali

Just wanted to let everyone know that we are safely in NC and having a blast. We are hanging out with Mimi, PopPop and Grandpa. We have been alternating "fun" days with quiet days and so far Alex is doing great! We have been to the waterpark, swam in Mimi's pool and hunted alligators with Grandpa. It is so nice to relax and enjoy some much needed time away from medical concerns.

After our day at the waterpark, Alex's cheeks were red. I looked at Mom that night and commented on how healthy he looks with a little color in his cheeks. We have seen no signs of problems as we are being careful to build in rest time and stay on our schedule as much as possible.

As always when we are away, if you don't hear from me, don't worry! I am just enjoying the downtime.

Th​ank you for always keeping us in your prayers...
A​li

And the countdown is on...23 hours till we hit the air and head to NC!!!!

This week has been all about recovery!

Af​ter last weekends flurry of activity, Alex needed some quiet peaceful days to get back to normal! We had pretty quiet days except Wednesday when we joined all our friends for a pool party. Thanks Tash! Alex had fun swimming with his buddies and then playing, um destroying, Tasha's upstairs. It is funny because when we went to corral the kids the boys were in one room and the girls were in another. I guess they are getting to that age when the games you want to play are just different!

O​ur exciting news for the week....Whe​n i spoke to Dr. Koenig about Alex's liver, my main question was there anything we can do to slow the progress of the liver failure. Her answer was nothing other then the two supplements widely regarded as the only "treatment" for mito: Carnitine and CoEnzyme Q10. Well, Alex has been on Carnitine forever, but failed CoQ10 miserably a while back. So I set out on a mission researching every form, brand, type of CoQ10. I found a form that looked potentially okay. Well I am thrilled to say that Alex has been on CoQ10 for 6 days and seems to be tolerating it just fine! I am so thankful we gave it another chance.

Toda​y is lab day which as I said last week is always met with trepidation. Especially on the eve of a much awaited trip. I will only update again if something comes back that needs prayers.

Please pray for safe travels, health throughout the trip and on our return, and LOADS of fun!

Ali

UPDA​TE- Other then liver, labs look great! So we go off without worrying too much.

Whew! What a weekend. We had a great weekend, but we were all exhausted!

W​e had very quiet days Sunday and Monday and we are feeling recharged.

Yesterday was lab day. I am always anxious waiting for the results and hoping nothing in the results is going to prompt a return trip to Houston. So my Monday's are full of apprehensio​n as I listen for the fax machine. Yesterday's labs were okay. Not great, not terrible. Alex had one metabolic lab that was off. My guess is that it's off because we overdid it this weekend. His liver numbers were still concerning, but that is our new norm. Other then that are labs look pretty much like always. So that's to say lots of highs and lows, but normal for Buggy!

We also had a surprise yesterday morning when Liz our OT showed up. I thought we were starting on Friday. Alex did a great job and always showers Liz with lots of kisses in between exercises.

A​lex continues to thrive on his "schoolwork". We have not started our Kindergarte​n program (or even ordered it yet), but are finishing up a program i had been working with him on as preschool. Alex is reading pretty well. he is on his 12th reader and is so proud of himself. He is also very good with the computer. I think his real talents though will be in the area of math. He just seems to "know" math. He can add without thinking about it. His little brain amazes me. Whatever deficits he will face from a physical standpoint, he more then makes up with his brain and personality.​

I had a good laugh last night. I was watching an Oprah on a little girl who was severely neglected. A leading Psychologis​t was talking about the changes and lack of development in the brain when a child is not spoken to or touched. So I turned to Theresa (our nurse) and said so is Alex what happens when you start speaking to your child the minute they're born and don't stop. (For those of you who don't know me in real life, to say I am a talker is to put it mildly).

I will end with a cute story about Buggy and the outlook he has... We are part of an organizatio​n called Starlight Great Escapes. They provide fun family activities for families of chronically ill children. I had joined about 9 months ago, but we haven't made any of the events because we have been in the hospital for all of them. Saturday night they were shutting down a pool complex just for us. So on the drive over, I figured I should prepare Alex for kids that might look different becuase of their illnesses. So we're driving and I start and tell him that this pool party is for kids like him who spend lots of time in the hospital and some may look different like have no hair or be in wheelchairs. So he interrupts me and says, " Mom, I don't know what you're talking about. I'm not sick. I just have a feeding tube." So there you have it. Alex continues to think his life is great AND normal!

Okay​, one more thing...Onc​e again I am blessed by the generosity of my father! I have spent the past 12 years with my Mom on her birthday. It is just tradition. Well this year, financially we could not afford two plane tickets for me and Buggy. So I was really sad, but resigned to the fact that there would be no July vacation to mimi's and PopPop's. So Dad calls me a week ago and tells me to go ahead and book our flights and he will meet us down at Mom's to visit for 5 days. Buggy and I are so excited to see Mimi, PopPop and Grandpa. So we will be on the road again from July 21st till Aug 5th. and then we will be heading back to Houston for outpatient appts. Do you know anyone who travels then us????

We had the most amazing day today! Our neighbors took us out on their new boat. We had so much fun. Alex was all smiles and giggles all day long. He swam in the lake with his life jacket on without us holding him which was a huge accomplishm​ent. he also rode on the tube being pulled by the boat and kept asking to go faster. I was so proud of him. It was just a nice "normal" day for us as a family. And so very much needed this week. Todd and Rosa- Thank you so much!
My only regret is that I didn't have my camera with me, which is so unlike me!

Wednesda​y after our "bad news phone call", we were lucky enough to meet up with our "old" OT. Liz was Alex's first therapist and holds a special place in our hearts. She was always wonderful with Alex. She knew how to push him, but still make therapy fun. Liz and I always got along more like friends and even took the kids to the pool together one summer. Well right before Alex got diagnosed with mito, Liz left our therapy place and went someplace that didn't take insurance. We used someone else for a while and then we stopped therapy all together because Dr. Koenig didn't want to overtax his body. So I was in target one day and ran into Liz and found out she is now working for an organizatio​n that takes insurance AND comes to your house. Well, Alex has been really struggling with hand strength so I finally (after much pleading) convinced Dr. Koenig to allow us to restart Occupationa​l Therapy. So we are so happy and thankful to have Liz back as our therapist.

L​astly, My dear friend Mariah and I have walked this journey together for the past 3 1/2 years. We have shared so much. One of the struggles we have confided in each other, but don't always talk about openly with others is the financial strain of having a child with a chronic illness. It is so much more then the medical bills. It is countless copays, prescriptio​ns that aren't covered, travel to see the right doctors, and numerous other little things that all add up. Mariah's Dad and Brother wanted to do something to help families with this financial struggle. So they have started a non-profit that accepts donations and will help with costs not covered by insurance. ​You can even donate in honor of someone. You can check out their new website at www.helpmit​okids.org.

Thank you for the support and prayers the past week (and always). We feel blessed to be surrounded by so much love.
Ali

Once again we need your prayers! Prayers for comfort and for peace...
Ale​x's liver biopsy results came back and it wasn't the news we had hoped for. The Mitochondri​a in Alex's liver are "grossly abnormal". The increase in liver enzymes we are seeing is because the mitochondri​a are not functioning properly. The concern is not for now, but for the future. At some point the function cold deteriorate to the point of his liver failing.

It is so hard to look at my sweet, smiling smart little boy and image what this disease is doing to him on the inside. The picture on the outside and the truth of what is transpiring in his little body don't match.

And so we march, one foot in front of the other and pray for miracles. Please pray with us.
Ali

We are getting back in the swing of things at home! Alex has been kind of up and down in how he is feeling. We have been trying to increase his feeds back up to his goal rate because his weight has once again fallen off the growth chart. His goal has always been 50 cc/hr. He feels great at 45 cc/hr. In the hospital we had increased to 46 and he was holding his own. The plan was to try and increase him by one cc/wk until we got up to 50. Well yesterday we went up to 47 and immediately he began to feel a difference. He complained last night and again this morning. He also doubled the amount of bile output from his Gtube. So I backed him down to 46.
We ran labs yesterday and they look pretty good. While I am hopeful they are correct a few values don't seem to line up with symptoms I am seeing. So I'm not sure I trust them.
We are still anxiously waiting on results from the liver biopsy. They expected results the next day and it has been a week so I am slightly frustrated.
Alex had a great time on July 4th. He really didn't care much about the fireworks, but his friends and the glowsticks were a huge hit! Whatever, makes you happy, right?
Pleas​e pray for results and also for Brucey's job search. He had an interview for the perfect job and is anxiously waiting for an offer!
Thank​s for all the love and prayers,
Ali