We had our playgroup halloween party today. We had so much fun as always. Alexs loves to be around his friends and so do I. It is the only "normal" in our week and it is so important to both of us. I am so thankful to our playgroup for all they do for us.

Alex and I fly out to Orlando tomorrow. We are so excited. I will not update until I get home unless something happens.

Bru​ce had a great interview today so our fingers are crossed.

Ali

Alex is feeling much better. Thank you to all who have been praying fo us. Bruce has his first interview tomorrow. We are praying for a job to materialize in the next few weeks. Our biggest fears are for medical insurance for Alex.

Ali

Another stumbling block has fallen in our path... Alex has a cold and a fever. A few years ago, I wouldn't have even batted an eye at a fever of 101 as some of you know. I sat home and weathered many fevers over 105. Now that we know about the mito every illness causes just a touch of fear. We watch Alex like a hawk. We have been told that it will be an illness getting out of hand that will weaken Alex and that has the potential to take his life so that is always in my mind. We laso have to watch every fever VERY closely because of his port. A central line infection is life threatening in and of itself because the line is in a vein that travels straight to the heart. So needless to say my days of shrugging off colds are gone.

Howeve​r, I only know one way to live this life and that is with a smile on my face and my feet marching forward with God by my side. I ask that you pray for me to keep my chin up as we forge ahead. The last year has been a hard one. It is not easy to stay positive when hit after hit comes with no break in between. Pray that my faith sustains me and carries me until life blesses me with an easier path to march.

Ali

Thank you to everyone who has reached out to our family. We are trying to be faithful that something will come along shortly.

Alex is having a rough week. He is not feeling very well. His GI motility is so slow that his feeds are backing up from his intestines into his stomach and causing pain. We are doing our best to keep him comfortable​, but there really is no good answer. We see a motility specialist when we go back to Houston in November.

Pl​ease continue to pray for our family during this scary time.

Ali

I write tonight asking for prayers.... We just found out that Bruce's company has decided to do away with his job. Him and his friend Alan are both being let go immediately. We are very scared. We don't know what this means for our family. Alex's medical expenses have taken there toll over the last four years. Please pray that Bruce finds a job quickly.

Ali

We are settling back in! Alex is so happy to be back in his surrounding​s and especially with his toys! He is doing really well with me, but having a hard time following directions with the nurse. He is just testing her constantly. After 8 weeks of only having to listen to Mommy it is hard to have to listen to someone else too. The only struggle I am having with him is bedtime. He is doing great at naptime, but bedtime is a fight everynight. He got used to a light room and Mommy being right there. I refuse to lie down with him until he is asleep every night. It just ain't happenin'! So he is working through it. It is just a hard adjustment.

Alex started back at therapy on Wednesday and I was pleasantly suprised. He did a great job. He loves his Andrea. He worked really hard and has not lost as much strength as we had feared. So that was really good news. We went from there to playgroup. He was so happy to be playing with his friends again. I don't think I even saw him all morning.

Other then that we have had a really quiet week. Alex is back to taking extremely long naps. I am waking him up each afternoon at almost 5:00. So it is nice to be getting back to normal.

We have two weeks and then we head off for our weekend of fun in Orlando.

Ali

HOME, SWEET, HOME!!!

We arrived home a little after 5:00 yesterday to a HUGE welcome home sign from our playgroup and balloons from Daddy. That sure put a smile on our faces!

I was oh so right about how much stuff I had in Houston, I am still unpacking. I think it will take me all week to get settled back in.

Alex is doing well. He had a hard time falling asleep without Mommy last night, but did great at nap time today. He seems to tire a little quicker then before and had some trouble with the stairs so i think he lost some strength, but other then that he is doing great. His belly feels good, his blood sugars are holding steady, so no complaints.​
We see Dr. Benzick next week to follow up and have labs drawn.

Thank you for all your prayers over the last 2 months.

Ali

I had no idea how much I had crammed into this hospital room. I guess after 2 months you can accumulate a lot. I have some stuff in the car and a little more to take tommorrow.

Alex has been a little off today with really high heartrates and blood pressures and sweating which he never does. I am just chalking it up to excitement over going home. I am hightailing it out of here tommorrow. There is a kid next to us with the flu. That is the last thing we need.

I will update once we are home. Please pray for safe travels.

Ali

I STARTED PACKING THE CAR!!!!! Things are going well. We are just so anxious to get home. We have labs the next two mornings and they are going to do an xray of his stomach to make sure everything still looks good. Other then that the goal is to have us on the road by early afternoon on Monday.

Ali

A quick update before I head to bed... Alex's belly is doing great. We are having some blood sugar problems, but they are not unexpected. We had to use our new D50 trick and Alex is having to have his blood sugar checked every hour. Poor baby! Other then that we are thrilled with how the day went. Oh...one other slight problem...A​lex has another allergic reaction to the dextrose. He is now on an adult dose of benadryl every 6 hours.

I will update tomorrow.

Al​i

4 days and counting....​
Jen, Landon, Alex and I will walk out these doors Monday side by side. We would not have chosen it any other way.

Today is one of the most critical days since we have been here. We are concentrati​ng Alex's formula today from half strength to 62%. We are hoping Alex's body will metabolize as it should and that his GI tract will tolerate it. Dr. Koenig has decided that only pain on Alex's part will stop us. We are going to push through pretty much anything else.

Yesterday we did the hydrogen breath test to test for small bowel bacterial overgrowth. It was negative as we expected it would be. It was strictly to rule out his distention, abdominal pain, and diarrhea. We know that these are just Alex not tolerating feeds as well as we would like. We also did an experiment with his blood sugar and a recovery plan for if his blood sugar drops really low. We will now carry a syringe of 25 gram of D50 (50% dextrose). (For comparison most people would get a D5 IV if they went to the hospital for dehydration​). In the event Alex's blood sugar dropped we would give him the D50 through his J tube and it would bring his blood sugar up about 30 points for an hour and a half. That gives me time to access his port and start IV fluids or get to an ER. We are really happy to have something in an emergency.

On another positive note Alex, has gained back ALL of the weight he lost in the weeks leading up to coming in.

I can't wait to see everyone!

Al​i

There is a light at the end of the tunnel...We should be heading home a week from today. There are 2 possibiliti​es. One is that things will go exactly as planned and we will continue to progress and go home on J tube feeds with no need for TPN. The other is that we will not be able to concentrate teh formula from half strength to three quarter strength. In that case we will need to stay on some TPN along with our feeds. We have come farther with our feeds then we ever thought possible so we are happy.

We are going to do one more GI test before we leave to test for bacterial overgrowth. Other then that the plan is tho increase feeds to 70 cc/hour tomorrow. Then on Thursday we will go to 62.5%. On Saturday we will go to 75%. And discharge on monday. If we get out early in the dya we will head home. If it is late afternoon then we will spend one night and head home Tuesday morning.

We need to be back here the week of November 10th. We have to see Dr. Koenig, 2 GI doctors and do a sleep study. Then depending on how Dr. Koenig feels and how Alex's belly and blood counts are doing we are going to try and not come back until February.

In the meantime, Alex and I are going on a fun excursion! My Dad offered to take us to Orlando for a long weekend to see our beloved Pirates play and to go to Sea World. We are really excited. We will see Aunt JennJenn, Uncle Jimmy, SkyeSkye, Grandpa, and maybe Mimi and PopPop. Alex is hysterical because he is more excited about the football game then seaworld.

I have to say thank you to everyone who has sent cards and gifts. You have no idea how much they mean. To our playgroup: you guys made our day. Thank you for being such good, loyal friends. We cannot wait for next Wednesday to see you guys. We miss you so much.

I leave you with a quote I found...God didn't promise days without pain, laughter without sorrow, sun without rain, but he did promise strength for the day, comfort for the tears, and light for the way.

Ali

Not much to report these days... Alex is REALLY itchy ever since getting his transfusion. He is getting benadryl and atarax two antihistami​nes alternating every 4 hours and extra doses of benadryl as needed every 6 hours and is still scratching constantly. We talked to Dr. Koenig and Dr. Pacheco (allergy and immunology) today about trying IVIG infusions once a month. They are typically used for immune deficient kids to help them fight off infections, but b/c it helps the immune system it may help Alex's allergic reactions. Dr. Pacheco is going to do some research and see if she thinks this will benefit Alex.

We also talked to Dr. Koenig about his anemia. My concern is that we won't be checking his blood counts at home. She feels like since he is going a month between needing transfusion​s and we will be back in Novembere we should be okay till then. We will also give an adult dose of benadryl and steroids before any future reactions.

T​he last discussion was about discharge. We should be going either October 13th or 14th. We have a few things Bruce needs to get before we come home, but we are pretty well set.

Thanks for all the prayers.

Ali

Not much to update... Alex had a blood transfusion yesterday. he had an allergic reaction to the blood, but we pretty much expect that these days. The pharmacist laughs about how sensitive Alex is to everything. his energy level and temperment are much better today. Other then that things remain on course. We are still hoping to be home sometime around the 13th of October.

Ali​