Really fast update...

We saw Dr. Benzick yesterday and that was fine. Nothing really new to report.

I had my support group meeting last night. It was really nice to sit with other parents who are going through similar things. Alex thought it was SO cool to eat dinner at church and he loved going to "Sunday school". He wants to go to church everyday!

To​day was our Physical Therapy Evaluation. They decide that Alex definitely needs physical therapy. He is able to do most of the gross motor skills he should be able to do, but cannot do "enough" of them and he doesn't do them "correctly". Because he is low tone and isn't very strong he tries to compensate and do them in ways that use the least amount of muscle. We are going to do PT once a week. We are excited b/c every other week will be in the pool.

That's all for now.

Ali

Here is my update...It has not been a great day. I accessed Alex's port, but it did not go as easily as we had hoped. He is still swollen aound the site so it was hard to feel where the access point was. But we did get it done.

I got a call from Dr. K today. There was a mistake and Alex's muscle biopsy never got sent to the lab. A resident was supposed to take it to the pathologist with paperwork. He took it to the pathologist​, but didn't leave the paperwork so it never got sent to the lab. Luckily, they have the muscle. It was transferred today and they are putting a rush on it. We should have the results next week. So at least I can stop worrying about why it isn't back.

Ali

We have had a really good week! Alex has been feeling pretty good. He loved Easter! He had so much fun on our Easter Egg Treasure Hunt and the basket at the end. The Easter Bunny was very good to Alex. He got lots of geotrax train stuff and matchbox pop-ups. He has been playing away.

Yester​day was our second week with our "new" therapist. He did GREAT! Alex and I both liked Emily more this week. He had a smile on his face for most of the session. He was able to do more then I have seen him do in a long time. There is a really big difference in his strength and energy when he is feeling good. It doesn't sound like much compared to "normal" kids, but to us it was huge! Alex was able to jump on a trampoline for about 1 1/2 min of the 2 min he was supposed to, do 10 sit ups, hold on and swing on a bolster swing while it was going crazy, and climb a slide 3 times using a rope to help. I was really proud of him!

Say a prayer for My nerves and hands to be steady today! I have to access Alex's port for the first time. I'm not sure which one of us is more nervous. Our medical supply company has to "check off" that I can do it and we have an appt with Dr. Benzick tomorrow to draw blood, get an immunizatio​n and have a checkup. Wednesday night we are heading to church for my first meeting with the support group I asked for. We will have dinner with other church families and Alex will go to "Sunday School" while I have my meeting. Thursday we have an evaluation with a physical Therapist. Our first visit to Houston, Dr. Koenig said she thought Alex needed PT. I didn't really want to add anything else. BUT, last week one of the first things the therapist said was, "Does he do physical therapy too?" She also thought we really need it. So thus the evaluation on Thursday! So we have a pretty busy week!

The only two down things...I still don't have a nurse. Miss Heather was supposed to start last Tuesday. She never came and no one has heard from her since! Very weird. The agency is looking for someone else, but I am frustrated b/c I really need some me time! Also, When we were in Houston 2 weeks ago, Dr. Koenig had the biopsy reports for the other 2 boys who had biopsies the same day as Alex. We STILL don't have Alex's back. It has been really hard for me to be patient. At this point we don't know why Alex's is taking so much longer. It could be it got lost in the shuffle or it could be that they found something unexpected. Dr. K has been in contact with me, but it is just a really hard place to be in. I would be okay if we were all waiting, but I just don't know what to think at this point. I am also waiting to hear what, if anything, the endocrinolo​gist wants us to do about Alex's blood sugars. So after 3.5 years of waiting, the answers seem so close, but I am waiting again. I feel as if I will have a sense of peace when I know WHAT is wrong with Alex.

Before I go... I ask that you pray for a good friend of ours. I have been talking to Jen for about 6 months now and we met Jen and Landon on our first trip to Houston. They are the nicest family. Landon now has a confirmed mitochondri​al disorder. Landon's lungs are affected by the mito, he has the flu and is in the hospital. He is struggling to breathe. Please pray that his lungs hold out and that Jen and James stay strong during this time. Here is there website: www.caringb​ridge.org/v​isit/landon​weber. You will be amazed at some of the pictures. He looks quite a bit like my little buggy!

Ali

I am so disappointe​d! I was SO looking forward to the nurse coming today and she didn't show up!!!! Hopefully Thursday!

Al​ex started Therapy yesterday with his new therapist and did pretty well. He liked that they have a therapy dog that looks like Hayley.

Hope​fully, I will have some results from tests later in the week.

Ali

We are settling back in. Alex slept until 10 yesterday morning. The he napped from 1:30 til 5:00! He was so tired. I have finally caught up on mail, laundry, unpacking etc.

Alex is happy to be in his playroom and with his toys. He is feeling pretty good. He said his "belly" (chest) feels all better, but his neck "still sores a little".

We are trying right now to decide whether to give Alex a break and cancel our trip to Cincinnati or whether to go. Bruce, Mimi and Dr. Koenig all think we should cancel. I am undecided. I'll keep you posted.

Ali

One of these days Alex is going to let us have an uneventful hospital stay!

We wound up drawing the labs last night. By the time we got everything done and Alex back on dextrose and feedings it was after 9:00. Shortly after he started shaking, wasn't communicati​ng with me, had a headache, he just wasn't right. We continued to monitor his blood sugar and it was all over the place. It was up and down between 65 and 170 several times. He also got a slight fever. He finally settled down around 1:00 AM. This morning he is completely back to normal.

We are being discharged, but it will likely be around noon. We have had the nicest nurses and pediatric team since we got here. The hospital is great about letting me "be in charge". They explain everything, ask me questions, and let me help in decision making. They are firm in the belief that I know Alex best and should be involved. Overall it has been a great experience.​
Again, Thanks to everyone for the prayers. We felt surrounded by love.

Ali

Alex has been such a trooper today! We started his fasting study at 11:30. It was an 8 hour fast. They tested his blood sugar every hour. If his blood sugar dropped below 45 we had a list of labs to run. At 6:30 his finger stick showed his glucose at 43. Unfortunate​ly when they sent a sample to the lab, it showed it at 52. So we just sent another sample to the lab. If it is below 50 we will draw the labs.Alex just fell asleep.

In other news...we met with the immunologis​t and Dr. Koenig again. Dr. K was just coming by to check on us, nothing new. The immunologis​t (Dr. Pacheco) shared the results from the tests we had performed last trip. It confirms what we already know. Alex's immune system is not functioning correctly. We are going to go home and repeat a vaccine and see if he makes titers. They are just waiting for the rest of the results to come back. Once everything is back in about 2 months they will have us come back. At that point Dr. K, immunology, endocrinolo​gy and GI will have a plan for us and we will discuss it.

They will monitor Alex overnight. In the morning if he is doing well we will be discharged. The only thing left is for my teaching on the port. Someone should be here around 8 AM to do that.

I will update once I know we are being discharged. Oh and to answer some questions...​we were kept in the IMU. They liked being able to monitor him continously. This morning I did convince them to let us off monitors intermitten​ly so we could walk around. Buggy and I were going stir crazy!

Ali

We survived! All the prayers that didn't help with the IV yesterday must have been on overdrive today! Mommy didn't cry a single tear all day.

We were first on the schedule this morning. They came to get us a few minutes after 6:00. As soon as we got down to surgery they told us that an emergency had come in so we would have a little wait. UGGG! They finally took him about 8:45. The surgery took a little longer then anticipated. They vein they were wanting to use wouldn't cooperate. TYPICAL! So they had to use a vein is his neck and thread it down to the port in his chest. Not a bad thing, just different. And 2 owies to heal instead of one. The doctor came and talked to me around 10:30. I was brought back to Alex close to 11:30. And we were back up to our room around 12. Unfortunate​ly we didn't get to stay long....

The pediatricia​n and Dr. Koenig decided they wanted Alex watched a little closer then they are capable of on the regular floor. It is completely precautiona​ry. We were moved to an intermediat​e unit. It is between ICU and regular. They just have more nurses and moitor a little closer.

Alex already loves his port. The IV was hurting his hand every time we tried to use it. We have switched over to his port and it is not hurting. he is doing really well. His neck is a little sore. That is to be expected.

The plan is to watch him overnight. Then tomorrow we are going to try a modified fast for the endocrinolo​gy unit. We should be discharged around dinner time tomorrow.

Th​anks for all the prayers. (Also for those of you who had the room phone #...Don't call it anymore!)

Al​i

They are coming for Alex any minute. We are first on the schedule for surgery. What a blessing! At least I don't have to worry all day. I will update once we are settled back in the room.

Thanks for all the prayers.

Ali

Where were all the prayers? Just kidding! I did really well today. The IV on the other hand didn't go so well. It took about 5 hours and about 10 sticks. Poor baby!

We met with Dr. K this morning. Alex's preliminary report is back on his muscle biopsy. It showed inflammatio​n throughout the muscle. We aren't sure what it means yet. BUT it means something is going on.

We also saw GI and Endocrinolo​gy. They have a few more tests to run and another syndrome we will look into. Not a lot of answers today, just a lot of telling our story over and over!!!

Surg​ery is tomorrow, but we don't have a time. I will update once surgery is over.

Ali

We are in Houston! We had to drive theough some pretty heavy rains. I don't know what happened to the 75 and sunny they were predicting!​
Tomorrow we have to be at the hospital at 9 AM to be admitted. We will see GI, Immunology, and Endocrinolo​gy. I am also expecting Dr. Koenig to stop by and see us. Last, at some point anesthesia will come by and talk to us. Dr. Koenig is concerned about the anesthesia. There is a condition called malignant hyperthermi​a that occurs in some mito patients. One of the sysmptoms is a fever after anesthesia. Alex has spiked a fever after his last three surgeries so this is a concern.

The surgery is scheduled for sometime on Wednesday. i do not have a time right now. We will be discharged on Thursday and travel home on Friday.

Some specific prayers:

1. For me to stay strong. I have been really emotional the last few weeks. I feel like I could cry at the drop of a hat.

2. For Alex to be brave. He is scared about this surgery. Also, they will need to start an IV Tuesday night. Pray for the nurses/anes​thesiologis​ts/medical transport team to have sure and steady hands and hit a vein quickly.

3. Pray for the surgery and anesthesia to go well.

Thanks for all the support.

Ali

Can you believe we had snow? Alex had a blast throwing snowballs at Hershey and Hayley. He was all smiles. We didn't last very long...mayb​e 15 minutes.

We head to Houston on Monday. Keep us in your prayers. I'll update as always.

Ali

Really Quick...

Ale​x and I spent last night at the nursing home! Boy am I glad to have that done. It was not a very nice nursing home to say the least. But Alex always sees the bright side...he told me this morning he was going to miss it!

Our nurse comes for the first time tomorrow afternoon. Hopefully, that will work well.

We leave either Sunday or Monday for Houston. I will let you know!