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