27 October 2011

The verdict.

So, it's in...

The answer was no. And I'm flat out stupefied.

-We have the money.

-Liam is "obese".

But they want him older & bigger (yet they can't quantify bigger).

I told them they should probably tell parents in advance that they won't do children under five (unless they look like a sumo wrestler) so we don't get our hopes up and raise the money only to be told we need to wait some more.

And I should probably go listen to my pastor's sermon on when God opens the door but won't allow you to walk through it. Because none of this makes any sense to me right now and I'm especially irritated at this all.

post signature

24 October 2011

Not what I thought I'd hear.

Dear Jennifer,

Thank you for the latest photos of Liam and the information.

I am sorry to give you the information that at this time, the doctors
feel he is still too young and small to undergo the procedures.
They prefer to have the child be about 5 for either the bone marrow or
adipose. However, they will reconsider in about a year's time.

Please do not be discouraged or give up. Your son is very blessed to have you.


This was my reply back:

Dear R. and Doctors,

I have received your email regarding Liam and that I should wait another year to come however, I respectfully ask you to reconsider. I feel some insight into Liam might help.

I never thought stem cells were a possibility for Liam because of the extraordinary cost. Even so, we prayed about it and researched it and that led us to you.

We were adamant about not trying HBOT but saw God do a 180 on us when we encountered Bob on an HBOT board. Little did I know that he ran that board. I had just joined in order to get some more information, decided against it (sounded like snake oil), then both my husband and myself changed our mind in an instant (separate from each other) after reading something Bob had written.

In thinking that stem cells were out of our possibilities, but knowing how God had made 80 dives of HBOT happen (we had those paid for completely by friends) I decided to see if going forward with the idea of stem cells could be made possible. We had no extra money and no chances of any coming in. But God made the impossible possible. He allowed the monies needed to pour in and we raised what we thought we never could in a few months time. We now have everyone's money, sitting here, with everyone anxious for Liam to get stem cells. The first obstacle had been accomplished! The second would be Liam's weight. I have watched my son go from failure to thrive to "obese" in only a 6 month time frame. The largest hurdle of all, getting fat on Liam, has happened. God has allowed the money and the weight to pour in. We have been so very blessed!

You state that we should wait another year until he is 5 so he is older and bigger. I can understand your age requirements. Yet if in waiting for him to be 5 is because he is only 4, I can state that he is the size of a 5 year old already. He actually wears size 5 clothing in fact! I tell you he is not a small child.

Also, because Liam has low muscle tone, he is unable to hold his head up well. That means he is in his chair or on the floor at home at all times. He can not sit independently. Traveling with him as he gets older, will undoubtedly be extremely difficult because airlines are not able to accommodate a person who needs to be in their wheelchair while in flight. While Liam is younger it will be much easier to fly with him as he will still be able to use an insert in the airplane seat to allow him to fly. As he gets older, that insert will be too small for him to use and I'm not sure how we could even be able to fly at that point.

I understand if you still do not want us to come. It is after all in God's hands entirely and if that is the decision He's made I'll just have to figure out what's going on around here and accept it! =) I just felt I needed to respectfully disagree with your decision due to Liam being the size of a 5 year old already and the way God has paved the way for us to come. I don't believe in accidents and the journey he has brought us through has led us to where we are now.

Thank you for hearing me out one last time.

Well, that was my reply in it's totality.

And now I wait.
post signature

17 October 2011

I applied for Liam to get stem cell therapy last March but he was denied because he was too skinny. I asked how fat they needed him and they couldn't give me a number for weight gain. I was just told that he needed to grow more and be able to have extra fat taken from his belly for the procedure.

This summer is when I started adding the coconut oil and the Duocal to his diet. I needed to get extra calories without extra volume and apparently it's worked really well. At Liam's GI appointment this week he was officially labeled as obese.  This new label cracks me up because while he has some chub, he is no where near what I would ever consider to be obese.

Liam's weight went from the 5th percentile to the 75th.
His height went from the 10th to the 25th.

But the marker that gives him the obese label is his height to weight ratio. It went from the 5th percentile to the 90th. He's grown well in weight but he's still short so his BMI is a whopping 17.44.

I'm so proud.

He has officially traded one label for another. FTT (failure to thrive) for obese.

I've reapplied for stem cell treatment with the hopes we can go soon. They need to be able to take 70-100 ml of fat. About 5 ml is equal to a teaspoon so they need at least 15 teaspoons. That sounds like a lot to have to find on Liam's belly even with his obese label.

According to the GI Liam needs to be restricted in his calorie intake at this point. In other words he needs to go on a diet. He is currently gaining 27 grams a day and should only be gaining 7. I'm fully on board with that. He is heavy and lifting him is hard.  But there was no way to do adipose treatment without getting this weight on first. Luckily our GI is on board with what we are doing and is excited for us. I'm to report back to her once we've gone so we can establish a new diet. All I need to do is take out the oil and duocal and we'll be good to go but they like to keep a close eye on him.


Let's hope that a BMI of 17.44 is enough for him to go!

post signature

12 October 2011

Sweet Sixteen

Being Irish (my dad is half Irish half German) I have always been in love with Ireland. When Rylie was young we talked a lot about going there someday, she is in love with it too. Then I got this brilliant idea!  I told her we could do one of two things when she turned 16. We could get her a car or we could take her on a trip to Ireland, which one would she prefer?

Rylie turned 16 in September and even though it's something we have talked about doing since she was 7, she was still surprised to find the tickets as a gift. After having Liam all life went on hold and our finances got mangled in the housing crisis and our family crisis, something we haven't been shy about sharing with our kids. Luckily I had been saving since Rylie was 7 and the money had remained relatively untouched. I started with only 20 bucks a month and would gradually increase it when I could. 

But after Liam came along I wondered if it would really happen. He is total care. And it takes someone intimate with him to care for him. I'm so thankful to my mom for moving in for the 2 weeks we were gone and allowing us to go on this trip. It's not like it's a stretch for her to step in and help out (I can always turn to her if I need it), but two weeks is a long time (she had no aid service while I was away and that's another post) and we couldn't have done it with out her.

After going on this trip I have really felt for the families of kids with special needs who don't have anyone to step in and help them out. I know how hard it is to get away at all let alone for two weeks.

We had an incredibly good time in Ireland. I miss it everyday. We were able to give Rylie an amazing trip, one I hope she will remember forever.

post signature

05 October 2011

The miles seem so small this way.

The only way I've been able to see or talk to Liam (and my other two) for the last 2 weeks has been by skype. Shawn and I are currently in Ireland with our oldest, Rylie.

He had fun talking to us on the computer. We sang to him, had him wave to us and had him giving Mimi high fives for us.

We get home late tomorrow night and I can't wait to squeeze the little man.