Alex and Maddy

Alex and Maddy

Saturday, October 31, 2009

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.


Friday, October 30, 2009

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.

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

More later....
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.

Monday, October 26, 2009

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.

Saturday, October 24, 2009

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...

Tuesday, October 20, 2009

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...

Wednesday, October 14, 2009

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

Monday, October 12, 2009

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!


Saturday, October 10, 2009

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.


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.

Monday, October 5, 2009

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!
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.

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????

Sunday, October 4, 2009

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

Saturday, October 3, 2009

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.

Thursday, October 1, 2009

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!!!