Not the easiest week!

This week we were in Houston for a series of appointments. Several of the appointments held surprises that caught me off guard. I will admit, I came home physically and emotionally exhausted. I have had some people ask though, so here is a brief breakdown:

Pulmonology: Alex's respiratory status is the worst it has ever been and has been steadily declining for years. We discussed several theories and her feelings are that his GI status, specifically his bloating, is effecting his lungs. She feels like his extreme bloating is pushing into his lung space and not allowing his diaphragm to collapse completely. She can't help this at all. The other change is that she wants to trial Alex on oxygen overnight. We will also repeat a sleep study on one of our next trips down.

GI: Dr. N wants to once again challenge Alex's body to see if he can handle not getting IV fluids daily. We have tried this multiple times in the past and always had to go back to fluids or TPN. We will go back to doing labs weekly to see how his body handles this as well as measuring his urine output. We are also trying a new medication when he has increased stomach pain. We are doing a round of antibiotics to see if we can decrease the bloating that could be due to small bowel bacterial overgrowth.

Neurology: Dr. K is concerned about his very poor hand strength and continuing neuropathy despite medication that we have increased multiple times. These both could be related to his syrinx (fluid in his spinal cord). We will repeat an MRI of his spine and brain as soon as possible to see if there has been any change. We are also keeping an eye on his "shaky" feeling for now as it could be quite a few different things.

Immunology: Dr. P continues to be thrilled with the change in Alex since starting immune replacement therapy. She also was going to talk to Dr. J about his respiratory status.

Endocrinology: Alex continues to struggle with significant hypoglycemia. However, Dr. R is pretty sure it is related to his poor liver function so again not really anything to do for it. He is already fed 24 hours a day. His growth has also slowed down, but there is a pattern of his gropwth being good on TPN and slowing when he is only on tube feeds. He does want us to continue to use the continuous glucose monitor as an early warning system for when the hypoglycemia reaches a level that needs to be treated.

The week was made so much better because we got to enjoy time with good friends. Sure does make these stressful trips better!

Where has a month gone?

I just realized it has been almost a month since I last updated! This year is just flying by!!!!

Right after I last updated, My sister and nephew came for a visit. We had so much fun. It has been too long since we were together. When the kids were younger we always saw each other several times a year. Now with Skye in school and the struggle to travel with Alex, it just doesn't happen as often! The boys had a great time. We went to the zoo, the trampoline park and just had lots of play time at home.

 

 

After a quiet a quiet week, we geared up for another crazy weekend last weekend. On Friday, we were fortunate to once again be invited to watch the Fort Worth Air Show from the VIP area with Make A Wish. Alex loves our time with his MAW friends. Each event we attend, we become friends with more families. We are so grateful for the fun events they continue to invite us too!

 



 

 

The next day we headed out bright and early for our Fall Campout with Cub Scouts. We woke up to FREEZING temps. We packed lots of warm clothes, gloves, hats, etc and headed out. We got to the campsite set up our tent and Bruce and I sat to hang out with some of our friends while the kids took off to the woods to explore! Alex had a blast. He spent hours in the woods being a "normal" boy! It was one of the most fun days he has had. Unfortunately, he paid the price. By dinner time, he came to me crying in pain from his legs hurting so bad. We left it up to him whether to tough it out or head home, but it soon became clear that he couldn't do anymore. We took down the tent and headed home. One of the hardest things for me as a Mom is watching Alex pay the price for fun. It breaks my heart that evrery fun adventure comes at a cost. However, Alex and I wholeheartedly agree that we wouldn't change anything. Sometimes, fun is just worth it! I continue to be grateful for Alex's pack and especially his Den who support Alex and accept whatever he is capable of. They have been such a huge asset to our family.

 

This past week, we laid low. We did manage to have a great afternoon at the park with our best friends!  We miss the days when it was easier to get everyone together.

 

This weekend, we once again joined our MAW friends for a fun adventure. BNSF invited us on a train ride complete with face painters, magicians, clowns, etc. Alex was just happy to have an afternoon to hang out with friends. While the adults enjoyed some fun conversation for a few hours.

 

 

Medically, Alex continues to do pretty well. We are once again struggling with some pretty significant Hypoglycemia. I am not sure that we can do anything different at this point, but Alex is tired of feeling "shaky". We have even seen some small seizures over the past week. We are getting ready to head to Houston next week for a few days (or possibly longer).  There has been discussion about restarting TPN (IV nutrition) as Alex has lost all the weight he gained on it and is back to 40 lbs. I will not know until we get down there whether we will be admitted. But, we have appts Mon-Thursday anyway.

 

Thanks for walking this crazy path with us,

Ali

 

PS- Please continue to pray for Bruce to find the "perfect" job. He has had some good interviews and we are hoping an offer is right around the corner. We trust that God is holding us firmly in his grasp during these difficult times. We appreciate each of you that has reached out to us.