Alex and Maddy

Alex and Maddy

Friday, July 31, 2009

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!

Monday, July 27, 2009

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...

Saturday, July 25, 2009

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...

Monday, July 20, 2009

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!


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

Tuesday, July 14, 2009

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????

Friday, July 10, 2009

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​

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

Wednesday, July 8, 2009

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.

Tuesday, July 7, 2009

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,

Saturday, July 4, 2009

Happy 4th of July!!!

Alex is doing MUCH better today! He slept really well last night and took a 4 1/2 hour nap today. He is raring to go for fireworks tonight. For the 2nd year in a row, we will enjoy fireworks with our playgroup friends. As you know, Alex LOVES his friends and it makes the night extra special. We are so thankful we are home in time to enjoy tonight. other then that we will run labs on Monday and anxiously await the biopsy results.
Tha​nk you for your always faithful support and prayers.

Friday, July 3, 2009

We are home! Alex is doing well. He is exahusted and has not been feeling 100% tonight, but I think he just needs to settle in. I will update more tomorrow!

Thursday, July 2, 2009

Alex continues to do great! We are increasing feeds and formulating going home plans. We will run some last bloodwork in the morning and assuming all looke good we will head out.

Thank you again for all of your prayers!

Wednesday, July 1, 2009

What a difference a day makes! Today was so much more relaxed! My little trooper is doing great. We have not needed to transfuse. Although we were told that the biopsy is extremely painful for 12-24 hours, Alex only had one dose of pain meds. We are anxiously awaiting the results!
We have restarted feeds slowly and as expectede Alex is tolerating them fabuously! We will continue to increase feeds tomorrow and finalize plans. We should be heading home on Friday in time for fireworks over the weekend.

We have continued to enjoy visits from many friends! It sure does make for a fun day to be surrounded by friends and laughter.