Oh So Hot!

But what a fun day we had!











Ali

Hope

You will be secure, because there is hope. Job 11:18

Hope is what I am surviving on right now. Hope that Buggy will remain healthy. Hope that we can get off TPN and back on feeds. Hope that Bruce gets a job soon. Hope that we don't lose our insurance. I feels like we are treading on thin ice and hope is my life line.

Overall, Bug is doing pretty well. His labs Monday were awesome! The best I have ever seen from Buggy. It was so encouraging. We cannot wait for him to be able to get to where we are doing TPN only at night and then hopefully off it all together.

We had a nurse come out this morning and we really liked her. We are so hopeful that she is the perfect fit for our family. She will be back Friday for a little longer.

Tomorrow, Bug and I are heading to the zoo to meet some of our friends who have 3 little girls with mito. We can't wait to have some time with friends.

I will update tomorrow with some pictures!
Ali

A day at the zoo

Despite the really hot weather, we decided to head to the zoo today. The dallas zoo was a having a preview of their new Savannah exhibit for members. The Savannah is by far Alex's favorite habitat. He wasn't very happy when I pulled out the cooling vest, but after a few minutes of fussing he got used to it. The new exhibit was great. Buggy loved feeding lettuce leaves to the giraffes. We didn't stay long as it really was hot, but it was fun while it lasted. I love to hear Bug spurt out animal facts that we have learned over the course of the year. I am always amazed at the amount of knowledge he retains. Here are a few pictures from our day:

Home Sweet Home

Yes we are home and boy did my bed feel good last night!

Alex is doing well. We are once again starting at the bottom with our feeds and have a plan to progress even slower. I cannot wait to make some progress so my sweet boy can get back to just feeds. It is so hard for him to be his happy, fun, crazy self while trying to tote around 12 lbs of paraphenalia.

We gave his first dose of procrit on Thursday night after his transfusion. Hopefully, that will be the last transfusion for a LONG time! Unfortunately when I got home our home health company had sent the wrong dose of procrit so I need to call first thing Monday morning and get it straightened out!

We also received a tremendous blessing this week. The organizatio​n "Help Mito Kids", (which was started by my good friend mariah's family) held a very successful fundraising walk this past spring. They are going to use a portion of the funds to help some of the Mito families and we were chosen to receive a one time reimburseme​nt for some of our out of pocket medical expenses!!!! This is an answer to prayer. It is so very needed and appreciated. We are very excited about it.

If you want to check out the website, it is www.helpmitokids.org . The money that they raise is split between research and direct medical expenses related to the Mito Disease that insurance does not cover. If anyone ever wants to donate or fundraise for a worthy organizatio​n, this would be it. Any money given in honor of Alex would be paid directly towards medical expenses that our family incurs that are not covered by insurance.

Also, you may remember that at the end of March we were blessed to do a photo shoot with a professional photographer through the organization "The Littlest heroes Project". Those pictures are up now. If you go to www.starglophoto.com and click on site. Then click on proofs. The password is Alex. Enjoy! She really captured his personality. ​

Thanks for continuing to ride this crazy rollercoaster with us!
Ali

Going Home

Alex got his transfusion yesterday and his first dose of procrit. He did really well. I am getting ready to start loading the car. We hope to be on the road by lunchtime.

I will update from home! Thanks for all the prayers.
Ali

Blood and Home

I should know by now not to get worked up that Dr. K always comes to the rescue!

So the plan is to get a transfusion today. We are finally restarting his procrit so we don't need to transfuse anymore! Then we will head home tomorrow morning and increase feeds very slowly.

One of Alex's favorite nightime nurses has been spoiling him with little treats all week. Last night she had a treat for Mommy. A sleep mask that said, SHHHHH, I'm sleeping! Well Alex had to try it on. So I got a cute picture.



I will update again if anything changes.
Ali

So very Frustrated!

Our day that started so well has turned really frustrating for me.

First, Alex has been begging to take out the IV in his hand. It is really bothering him and is very painful if we try and use it. After talking to the nurse and our team, we decided to check a CBC and if every thing looked good take out the IV. This decision was made because the only reason we would need the IV was if he needed a blood transfusion. Well his CBC came back and he is very close to transfusion level. This frustrates me to know end because Alex was on procrit for a year and only needed one transfusion when he was extremely sick. After speaking to the doctors they asked us to try weaning off procrit. We have been off procrit for 6 weeks and are the verge of our second transfusion. I feel like we should put Alex back on procrit. He was doing great and it seems obvious to me that his body is not able to compensate to being off the med.

Then, earlier today everyone (primary team, Dr.K, GI dietician) had all decided we would go home tomorrow or Friday and increase feeds even slower so Bug's body had a chance to adjust and not feel stressed out. Well a new GI (who I have never even seen) came in and decided we need to increase feeds every few hours and that we should stay until Alex is off TPN and on full feeds. I do not think Bug's little body can take that and I do not want to make things worse. Hopefully, I am wrong and he sails through and we are home in a few days on full feeds.

Please pray for Buggy to feel good. Pray that the doctors are receptive to want Alex and I tell them and that they do what is best for him.

Ali

Not Much to Say

I really don't have much to report!

We are waiting to see GI. We need a plan to increase feeds slower and want there input. We have started half strength feeds at 5 cc/hr. It has only been a few hours, but so far so good.

Other then that we have been out and visiting. We went and saw a group called Hugworks perform some music. They were awesome. Alex really enjoyed it.

We are hoping to finish antibiotics and be discharged either tomorrow or Friday.
I will keep you updated.
Ali

Feeling Better

Alex is feeling better. His stomach still hurts, but the fever is gone for now. The plan is to start half strength feeds tomorrow. We will start back at 5 cc/hour and see if his fever comes back. Please pray his pain stays under control.

Alex is so loved at this hospital. We are so blessed that when we are here he is surrounded with people who love him and are so very kind to him. he woke up about 9:30 this morning and minutes later was already involved in a music session with Christine. Music Therapy is Alex's very favorite thing to do at the hospital. If he could spend all day playing and making up stories with Christine he would. She had no sooner finished when Stacy his favorite Child life specialist came in and whisked him away. I got to enjoy a peaceful shower and Alex went to the playroom to make me a surprise. He also did plenty of visiting with all his nurses. When he woke up this morning his first question was "when can I see my cute Dr. Koenig". I knew she had clinic this morning so I told him it wouldn't be until this afternoon. So it was much to my surprise when right before 10:00 Dr. Ka nd Lakeesha popped in! They told Alex they just couldn't stay away. What an amazing team we have!

I quickly discussed with Dr. K and Dr. P the frequency of Alex's fevers. They are pondering why Alex gets So many fevers. Dr. Koenig has said that none of the rest of her patients get fevers as often as Alex. It would be a pain anyway, but the central line just complicates matters. Even if we are 99% sure we know why he has a fever, because of the line we cannot take any chances and it just means that the safest place for Bug is in the hospital when he spikes a fever. I also asked once again about Buggy attending school. The matter was quickly put to rest as Alex cannot seem to handle any time in groups of children without getting sick. They did both agree to allow him to participate in cub scouts in the fall!

Thanks for loving us, praying for us and walking this journey with us.
Ali

Settling In

We are up in a room. Alex is doing well. His fever is down for the time being. We had to stop feeds last night which was really disappointing. Once we talk to the doctors I will update again.
Ali

Prayers Needed

I sit tonight on the edge of my seat. Our bags are packed. And we watch Bug trying to decide whether or not to go to Houston. His temp which started this afternoon around 2:00 at 101.5 has been at 102.6 for a while. I have talked to Dr. Koenig and she has left the ball in my court. Earlier we felt that this could be a metabolic fever brought on by us increasing his feeds. However, as the temperature creeps up that seems less likely. And so we wait and check temps. We desperately want to stay home BUT we also want to keep Buggy safe.

Please pray that I make the right decision. Please pray for Buggy to feel better. Please pray for Bruce to get a job SOON.

Ali

UPDATE....Leaving for Houston. Temp 103. Will update in the morning.

Birthday Party times 2

Yesterday, was a whirlwind! Two of our close friends from playgroup both had birthday parties! It was fun day with lots of much needed time with our friends. I say it all the time, but Alex and I really miss our playgroup when we are away. Brookie's party was a hollywood theme so Bug wanted to be a director. He looked really cute.



Alex is doing really well! Yesterday was a big day as we were able to get his feeds up to 20 cc/hr. That was the magic rate where we could attempt to stop TPN during the day and just run it at night. He gave us a scare at first as it didn't look like his blood sugars would hold. Luckily, his body adjusted and we were able to go back to our small (much more manageable) backpack during the day!

Tomorrow is lab day. I am also hoping to speak to a Dr. K about a couple of outstanding test results. I will update after I know more.

Ali

New Blog with LOTS of Pictures!

While I have loved the ease of our caringbridge website, I have missed being able to share pictures of my Buggy enjoying life! I have tons of good pictures and feel limited on cb by the size and quantity of allowed pictures. So I am making a move! I will continue to use caringbridge as a way to let you know I have updated, but this will be my primary site.

We were SO sad to say goodbye to Mimi this morning. It is always a tearful time at the airport. We wish so badly we could be closer. Mom- Alex and I love you with all our hearts. Thank you for taking a few days to come see us. We will be counting down the days until July!

Hope you enjoy the pictures on this new page!
Ali

PS- I will be copying over my posts from CB so that they will all be archived here.

This week is flying by so quickly! Alex and I hate that our time with Mimi is coming to an end. We all wish we lived closer.

Mond​ay was quite an exciting day at horseback riding. It started out the same as always. We were nearing the end of our riding time when a tractor went by us on the trail. The tractor was spreading fertilizer and sprayed some into Eeyore's eyes. Eeyore started bucking and kicking and jumping all over the place. Alex was like a bull rider holding on for dear life. I was no help as the horse had shoved me into a gulley. Finally, Tracy (his instructor) was able to grab Alex before he was thrown to the ground. Alex was scared, but got back on and rode Eeyore back to the stables. By the time we made it to the car, he told us it was the best day horseback riding ever!!! That experience must have worn him out because he was too tired for playgroup. He chose to keep napping! Poor Mimi sure got a show!

Tuesda​y, we had therapy in the morning and then went to check out the place where we are having Alex's birthday party. It is an indoor safari park with a train ride and robotic animals. He loved it. We had a quiet relaxed afternoon.

T​oday, we headed to the zoo. As you all know we love the zoo. It was pretty hot so we didn't last long, but it was fun.

On the medical front....Al​ex continues to do well. We are up to 10 cc/hr on feeds and Alex is doing pretty well. He will be SO happy when we are done with TPN. It is so hard right now trying to get around with both TPN and formula plus 2 pumps. Alex's labs looked pretty good. We are still waiting on some specialty labs that the endocrinolo​gist requested though.

We ask that you continue to pray for Bruce to get a job, us to have the funds to continue Alex's private insurance and Alex's health. We also ask that you pray fro our dear friend Cooper Knight. He had his small bowel and colon transplant 2 weeks ago and is in rejection.

Thank you for walking this journey with us.
Ali

We are home and settling back in!

Tuesday we saw GI. We came up with a plan to get off TPN and back on feeds. We started that plan today. We are starting with a pedialyte substitute. We began at 5 cc/hr (a teaspoon). When he can tolerate that continuousl​y we will incresae to 10 cc/hr and then 15. When he is tolerating 15 cc/hr, we will switch to formula and start back on 5 cc/hr. Best case scenario we will be off TPN and back on feeds and J tube meds in 2 weeks.

Wednesday we saw endocrinolo​gy. We discussed Alex's growth and hypoglycemi​a. We are running some labs to see if we can find a cause for the severe hypoglycemi​a. He is a little concerned about Alex's growth velocity and it will be something we are keeping a close eye on. The general consensus between GI and endo is that Alex's blood sugar problems stem from his liver. Your liver is contributes to regulating your blood sugar and since Alex's mitochondri​a are so abnormal in his liver they feel that he cannot store/and or access glycogen correctly. Unfortuatel​y there isn't anything we can do abou it.

Wednesda​y we also picked Mimi up. Alex and I are both so happy to have her here. We are having fun and planning lots of fun activities for the next few days.

Thursd​ay we saw a pediatricia​n who sees chronically ill/medical​ly fragile children. It had been suggested to us some time ago and we just had not done it. We know this pediatricia​n well as we see him in the hospital, but it was a matter of making it official and having him join our fabulous team in Houston.

Tha​nk you to all of you who prayed for us, called me, emailed and checked in. Although I may not always get back to you, I could not do this without your support.
Ali

Once again I apologize for the lack of updates. This is the first time I have been on the computer since Wednesday.

Alex got his transfusion on Wed and we were discharged Thursday morning. He perked right up after the blood. We arrived at the Knights and have been busy playing and enjoying ourselves.

T​oday we have an appt with GI, tomorrow we see endocrinolo​gy and Thursday we see a special pediatricia​n. The exciting news is that tomorrow we pick Mimi up from the airport.

Ale​x is doing good except for some horrible hypoglycemi​a. His blood sugars are going dangerously low while I change his TPN.

I will update in a few days.
Ali