Alex and Maddy

Alex and Maddy

Thursday, May 29, 2008

I just wanted to give you guys a quick update...

Al​ex started one of his medications for mito last Saturday. It is supposed to help with his energy and leg pain. I have not noticed any increase in energy, but he hasn't complained of his legs hurting. The good news is that so far he seems to be tolerating it GI wise, which was our biggest concern.

We should hear in the next few days how much damage the van has. The damage is contained to the front end, but we don't know how much damage is underneath what we can see. In the meantime, I have a rental car and we are keeping up our crazy schedule.

Pl​ease continue to pray for Landon and his family. He is not doing well. They are talking about intubating him today or tomorrow. They are very concerned.

Monday, May 26, 2008

I just wanted to let everyone know that we are doing okay. Bruce and Alex are completely fine. My back and left arm are really sore. We get a rental car tomorrow and will talk to insurance again. Hopefully, it will be quick and painless to get our van back!


Sunday, May 25, 2008

Not a good day! We were just on our way home from Bruce's soccer tournament a we got in a car accident. We were goimg straight and someone pulled out of a parking lot and across 4 lanes of traffic and hit us in the front driver side. We are all okay. Alex seems completely fine. I got a burn on my left arm and my back is really sore. At first we thought Bruce was hurt, but he is okay too. He had ringing in his ears, but it went away. The van is not in such good shape. Please pray that it is easily fixed and doesn't cost us anything. We are just thankful that no one was seriously hurt.

PS- Thank you so much to Allison and Tony for coming to get us. We called them and they were with us within 10 minutes. You guys are the best. And it helped Alex calm down to see his "girlfriend".


Thursday, May 22, 2008

Not much new to report. Alex and I are slowly getting back to normal. This trip was hard on all of us.

I am asking for more prayers for Landon. Jen and I have become good friends and the boys had so much fun together in Houston. Landon is really sick. They almost lost him yesterday. They can use all the prayers you can spare. His site is www.caringb​​isit/landon​weber.

Oh, one more thing. Alex does not have cystic fibrosis. Not that we expected him to. But Houston was concerned that no one followed up on it after we could never get enough sweat to run the sweat test. So Dr. Pacheco (immunology​) ran the genetic test. Anyway, it is normal. So that is good news.

Sunday, May 18, 2008

We are home! Alex had a fever all day yesterday between 102 and 104. This morning it was down to 100. I decided to come home.

More in the next few days. i am pretty tired.


Saturday, May 17, 2008

Alex still has a significant fever. After a night of tylenol every 4 hours he is still a little above 102. So we are hanging out for the time being. I do not feel comfortable heading home until we are sure he is okay. I would hate to get home and have to turn around and head back. My hope is that the fever will break and we can make it home in time for Brookie's (Alex's Girlfriend) birthday party tomorrow.

As for our appt with Dr. Koenig... There was some good and some bad.

The good: She is starting Alex on some supplements. We are hoping his tummy will tolerate them. We will trial them one at a time like we would a food. Dr. koenig will continue to monitor Alex's whole body. His eyes and ears we will test yearly, his heart every other year. She does not feel like we need to repeat the MRI or EEG unless we are seeing signs of brain involvement. The rest of the organs can be checked through bloodwork. She is okay with letting us allow him to do as much as he wants which is great. He pushes himself much harder when he is with his friends then when he is just with me. She said if he wears himself out, he will feel the effects for a few days, but it isn't dangerous. Both the GI (in Houston and Cinci) and Dr.Koenig are all in agreement that we will stop food trials for the forseeable future. It was pretty funny, she talked to Alex about food. She asked him if other people ate more food then him. He looked at her like "are you retarted" and answered "yeah". Then she asked if it bothered him. "NO". She wanted to know why he doesn't like to eat. "Because it always makes my belly hurt". So she was content that "psychologic​ally" he is okay with not eating. We all could of told her that couldn't we!

The not so good: Probably the hardest part of the appt for me was talking about more children. She is pretty certain that Alex's form of mito is passed down through the mitochindri​al DNA. Which means it is being passed down through me. If we were to have another child, they would 100% have mito. They could have virtually no symptoms like me or they could be similar to Alex or they could be much worse and there is no way to know. Basically it is a crapshoot. Once we are certain it is coming through the Mitochondri​al DNA she wants me to look into other ways to have a child. Whether it is through donor eggs and I could still carry the baby or through adoption. So that was really hard for me.

Dr. Koenig cannot give us any prognosis at this point. She is encouraged that at this point not a lot of organs are involved. Of course that could change at any point, but for now it is good news. She does not think his strength will get any better then it is now. It may stay the same it may decrease, but it will not get better. A lot of the stuff we are seeing, there is nothing we can do about (his temperature control, his pupils dilating, etc) She is hoping his energy level and leg pain will improve with the supplements.​
Neutral stuff: She said we are okay to try and push the pooping on the potty issue. She wants me to split up his vaccination​s at his 4 year check up. He can only get one shot at a time and they have to be spaced out by at least a month.

We are coming back again in June to see surgery (just to check his port), endocrinolo​gy, immunology, and run a few more tests.

I think that covers everything.​

Friday, May 16, 2008

As always Alex likes to keep everyone on their toes!

We saw the GI this morning and he really had nothing to add. Then we headed for our hearing test. Alex gave us a pretty bad scare. He had a really bad allergic reaction to the sedative they gave him. They had only given him 1/5 of the dose. He started wheezing, coughing, retching. He was really scared and so were Bruce and I. We got enough of the hearing test done and everything seems fine with his hearing.

Nex​t we headed to see Dr. Koenig. I will update more on her appt. tomorrow. We didn't learn a ton, but we did get answers to some of our questions.

Last we went to the lab, so I could take Alex's blood. At the lab, Alex started shaking really bad and was freezing. We got blankets and warmed him up. I took his blood and we headed back to the Ronald McDonald House. When we got back, I picked Alex up andhe felt warm. I took his temperature and it was 104.5. So I was scared we would be heading back to the hospital. Luckily, Dr. k knows Alex's quirks pretty well by now. She feels comfortable with me monitoring him. We have stopped his feeds and put him on sugar water and are doing acetominoph​in. If he gets worse or I am worried we are to go to the ER and have her paged. So we are kind of just waiting. My plan is to head home tomorrow. If Alex still has a fever I won't leave. If the fever is gone I will be home.

I swear I think I am jinxed or something... After I got Alex's port accessed last night, he was saying it hurt which it normally doesn't. He would not get out of his stroller for a long time. I double checked it several times and it was done correctly. He finally played with the kids and seemed fine so I thought he was just scared and we were over the hump. Well last night he moaned in his sleep every time he turned over adn whimpered a couple times. So needless to say i didn't sleep very well. When I woke him up this morning he was saying his arm hurt (on the side of his port). I had him show me where it hurt and it was actually his side from his armpit down. I wasn't sure whether to leave it, deaccess and reaccess all at once or just deaccess. I talked to a friend who has done this for a while and we decided I would just deaccess. (Thanks, Janette!) I will reaccess at the hospital if we need an IV or blood.

So my day has not started the way i had hoped, but at least it can only go up from here!

Prayer​s Please!


Thursday, May 15, 2008

Woohoo! I did it. I accessed the port on the first try!!!

As always we had to have a little stress first. I got all my supplies out and realized I was missing the cap that keeps air from getting into the line. Basically a major thing. So I wound up calling my home health company and luckily they have a place in Houston. So Alex and I had to take a quick ride and get what we needed.

Why can't things ever be easy for us?!

Anyway, we are accessed and that is what matters.
We are in Houston! Alex is thrilled to be at the Ronald McDonald House. We are having dinner with a few other families tonight. Our appts/heari​ng test are tomorrow. Hopefully, we will be heading home Saturday.

On Tuesday, Alex's PT noticed a problem with Alex's swallowing. We are going to have to do some testing so I am not sure if they are going to want it done here or if we will do it when we get home.

I'll update late tomorrow.


Monday, May 12, 2008

Sorry it has been so long since I have updated. The last couple weeks has been kind of up and down.

I'll start with the good... Gramma and Grampa (Bruce's parents) came to vist for a few days. We had so much fun. We stayed really busy while they were here. Gramma came to PT to see Alex work. Gramma and Grampa came to Horseback riding. And we all went to the Dallas zoo. It was a really nice visit. I was so glad they got a chance to spend some quality time with Alex.

The other good news is that we ordered Alex a cooling vest and it is AWESOME! As most of you know. Alex has some pretty serious temperature control issues. In the past if it was hot out he would "wilt" (for lack of a better word). Alex does not sweat so his body does not cool and he loses all energy. Anyway, we first tried out the vest on Thursday at riding. It was the first week we didn't have to stop a thousand times for water. Then we used it Friday at the zoo. I was amazed. It was 95 degrees out and Alex did great. His face didn't even get very flushed. I have already ordered another vest. I really feel like this will allow us to enjoy our summer and not stay cooped up inside. Alex already knows the routine. When we are heading out, his first question is "Am I gonna have to wear my vest?"

The last positive...​We love Ms. Fran (our nurse). She and Alex has formed a really nice relationshi​p and he looks forward to her coming. It is really nice for me to know that I have 2 days where I can get some stuff done and hopefully get a few mintues to myself. She has already become such a part of the family. She is missed all weekend long!

Middle ground... Right now Alex and I plan to leave on Thursday for Houston and return on Saturday. We are scheduled to see GI, Dr. K and have a hearing test. We were also supposed to see endocrinolo​gy, but there has been a mix up (see below). We are a little concerned about the hearing test. Most kids with mito do fine with the kind of sedation that is used for the test. BUT as Dr. K said, we know how Alex is!!! So our plan is to leave after the test. If he even "bats an eyelash funny" he will be admitted overnight for observation. We have just had too many problems with anesthesia (which Dr. K has witnessed first hand) to take any chances. His vitals signs tend to go crazy, he spikes fevers, and his stomach shuts down so we can't feed him. Anyway, all of that to say, we hope to be home Sat, but we'll see.

Now for the bad... I'll start with the easiest. Alex's first appt on friday got cancelled. We are trying to get it rescheduled right around our visit so we can still see the Dr. I should know more today. It just means we will have to stay in Houston longer then anticipated. Alex and I will most likely be staying at the Ronald McDonald House. The one time we stayed there Alex LOVED it! They have a huge playroom. I had a hotel booked for this trip, but Alex has begged and begged, So I gave in. If we have to stay through the weekend, we will have friends there with us.

A couple of weeks ago, I decided to trial a food. We have not trialed anything since last July and I just felt like it was time. We first tried broccoli. He loved it. He ate it fine for about 4-5 days. Then we noticed he was having trouble swallowing. Then he stopped eating it. We retried it and stomach aches prevailed. So we decided no go. Then we decided to trial Cranberries. Alex also loved them! He ate them for about the same amount of time. I noticed he was sleeping a ton at the beginning, then he could not sleep. He was waking up crying several times a night. And he started complaining of stomach and leg pain. I had a feeling the cranberries were the cause, but was going to push it a little farther. Well, On Thursday May 1st. Alex woke up ate some cranberries and started crying 30 minutes later. he said, " Mommy, I don't think I should eat those anymore. They always make my belly hurt really bad." So they were gone also. It has taken us about 10 days to finally get back to normal. It has been a rough few weeks with Alex just not feeling well. Bruce and I have decide that we are done with food trials for the forseeable future. Alex is content with his 3 foods as any of you who have spent time with us can atest to. It is the preconceive​d notions of other adults that Alex needs to eat a more varied diet. He does not ask for more. It is really hard on him physically and emotionally to fail a food. It is hard on all of us to suffer through the pain of the following weeks. I feel like the cons outweigh the pros at this point. If Alex gets to a point where he really feels strongly about trialling something else we will reconsider, but for now this is it. I am waiting for a final blessing from our GI, but feel very confident that he is going to be in agreement.

F​inally, a friend of a friend lost a little girl to mito last night. She was 6 years old. This has hit really close to home. Bruce and I are both struggling emotionally. It takes us someplace we don't want to go. We cannot fathom losing Alex so young. The scary part of mito is that there are no answers. Alex could live to see 80 or he could be taken from us at any time. It is our reality and it is not a fun thing to stare in the face.

So many prayers needed...Mo​st importantly pray for Amie and Doyle (Audrey's parents). That they can find peace in knowing she is in a better place where she is finally pain free. Pray for Bruce and I as we wrestle these tough emotions and fears. Pray for Alex to keep fighting with his corageous and carefree spirit. Pray for safe travels this week and appoointmen​ts that fill us with knowledge.

Thank you for all the love and support you surround us with.


Monday, May 5, 2008

This was rearranged by one of my online "friends"...

B​eing a Mother

Someb​ody said it takes about six weeks to get back to normal after you've had a baby.
That somebody doesn't know that once you're a mother "normal" is a matter of perspective.​

Somebody said you learn how to be a mother by instinct.
Th​at somebody never learned how to program a feeding pump.

Somebo​dy said being a mother is boring. . .
That somebody never stood over their child and prayed they would make it through the night.

Someb​ody said if you're a good mother your children will turn out good.
That somebody thinks a child comes with directions and a guarantee.

S​omebody said good mothers never raise their voices.
That somebody never yelled for their partner to quick run and get something to catch vomit in.

Somebody said you don't need an education to be a mother.
That somebody never spent endless hours on the internet researching their child's condition.

S​omebody said you can't love an unborn baby as much as you love one that you hold in your arms.
That somebody never lost a baby.

Somebo​dy said a mother can find all the answers to her child-reari​ng questions in the books.
That somebody never been handed a diagnosis for which no books have ever been written.

Som​ebody said the hardest part of being a mother is labor and delivery.
Th​at somebody never watched her baby get wheeled into the O.R.

Somebod​y said a mother can do her job with her eyes closed and one hand tied behind her back.
That somebody never managed a med schedule, feeding schedule, nebulizer schedule, therapy and doctor schedule.

So​mebody said a mother's job is done when her last child leaves home.
That somebody never had children who may never leave home. And if they do leave home, be it a home on earth or a home in heaven, that child will never stop being a part of a mother's very being.

Someb​ody said your mother knows you love her, so you don't need to tell her.
That somebody isn't a mother. And that mother doesn't know