Sleep Study!

Sunday we left for Florida. We were due at the sleep center at 8 pm. I was fully prepared (at least mentally) for what was ahead... at least I thought. We got there about an hour early and went to grab a bite to eat which we inhaled due to the fact the I hate to be late (Mitchell is quite the opposite). When we arrive, right on time, the lady met us at the door (we were the last to arrive, imagine my frustration). When we got to the room much to my surprise there was a full size bed for the parent and a crib of course. This was a blessing due to the fact that we thought Mitchell was going to have to get a hotel for the night which would have been more $$$.

AM didn't get "hooked up" until around 1030. The "hook up" process last about 30-45 minutes so we were done around 11. She was very cooperative for the most part (I couldn't imagine going through this with a toddler...uuuggghhhh), until the vibration sensor was attached to her throat. She became quite vocal. She wanted us to know how she felt about all this. Obviously we were tickled and couldn't quit laughing since she doesn't ever complain about anything. After getting all 30 or so monitors on they wrapped her head with gauze as well as all the wires. She was not having this. She screamed her head of (so uncharacteristic of her) until they were done. She was do to eat around 11. I tried to feed her but needless to say she was worn out and didn't eat. She slept very soundly until 6.

She was a trooper through it all and I am hopeful this is her last sleep study!!!

Some pics of the process for your enjoyment:

Other odd facts about this sleep study...

They can hear your every word... should have kept some thoughts to ourselves (as well as some bodily functions)

They see your every move, even in the dark... creepy feeling that you are being watched

Our tech may have been going through drug withdrawals with all the nervous twitching going on.

It was very chilly in our room and I am never cold.

The shower in the morning was less than enjoyable with absolutely no water pressure. 

Monday we went to see doctor Miller and were very encouraged with AM's progress. We are changing a few medication (upping the dose) but all in all everything looks great which is a blessing. 

And because I am behind... Let me share my day today. Due to the fact that AM's cortisol level was not checked at the sleep study we had to go this morning and have labs. Every time the girls have been so good at getting the vein on the first stick. NOT TODAY! we eventually got an order and were able to get blood from her foot (hopefully for all 5 test that need to be done). While holding AM's foot steady the tech tells Miles (my 3 year old) "don't do that." I look over and he has my car keys stuck in an OUTLET! I scream and tell him to take them out and he wiggles them to try and remove the key. My heart is about to explode because I couldn't do anything. Luckily, after tears from mommy yelling, he is okay and didn't suffer the consequences of sticking metal in an outlet. 

I could not possible deal with more stress in my life BUT unfortunately GOD thinks differently. I can only trust that "for those who love God all things work together for good, for those who are called according to His purpose." (Rom. 8:28)

4 months old!

Ann Margret is 4 months old as of the 26th. It seems time is just flying by. This can be a good thing and a bad thing. Good because as she gets older she is developing more just at a slow rate. Bad though, for many reasons. One, I'm still waiting on her therapy to start. We found out that AM had prader-willi at 1 month of age and it is now 3 months later and not one therapy. It is so frustrating waiting on them to get their stuff together. I feel like we are so far behind at times but then I realize she was diagnosed early and we are still ahead of the game. I just want the best possible outcome for her and early intervention is the best way to achieve that. Two, along with not having therapy she is still steadily falling behind in her development, which breaks my heart as her mom. Parents always want to see their child succeed. I see other babies her age or younger and it tears me up. I know that this will be the case most of her life or at least these first couple of years but its hard. All I can do is take it all to God and ask for His help. He constantly reminds me that His plans are better than anything I could imagine for myself and that AM was gifted to us because we are the best parents for her. The best family for her. The best people to LOVE her. We are called to point our kids toward Jesus and I truly believe PWS is part of Gods plan for AM. AM will struggle with hunger physically but I pray she realizes that Jesus can fulfill her spiritual hunger and for that matter her physical hunger. I pray he uses this disease to increase her knowledge of how much He gave for us, for her. And, how much she needs Him as He is reminding me everyday.

I am so proud to be her mom, though I feel incapable most days.

Precious Ann Margret

4 months

One Week and Counting...

Ann Margret has been on Growth Hormone for one week. Surprisingly the shots are getting easier even at this point and she doesn't seem to be bothered much by them. We have seen some improvement in movement though minimal, its improvement. 

We were sitting on the bed the other night and she got a glimpse of our dog Henry. She went crazy moving her extremities to get to him. I got a little video of some action but, of course, as soon as I turned on the camera she stopped moving like crazy. Anyway, I thought you might enjoy it. What looks like little movement to you is an awesome accomplishment for a 3 month old PWS baby.

enjoy!

-Heather

Growth Hormone!

We started AM on growth hormone last night. I think this is what made everything real to me. I hate that I have to stick a needle in my little girl every night. I hope that soon they will have a cure and no other mother has to go through this with their child. I love her and I pray God uses her life in a mighty way. That's what keeps me going!

STRESSED OUT!!!

Maybe its all that is going on in this month and the coming months, but I am about to explode!

January has proved to be an eventful month. I started back at work earlier this month, Miles turned 3 as you know, I'm trying to get Ann Margret hooked up with all her therapies as well as get some cost assistance for her medical expenses, and to top all that off... POTTY TRAINING! Needless to say my 3 year old may be closer to 4 before he gets there at this point. February will be even busier with Mitchell gearing up for DNOW, a worship leader conference in ATL, a new baby cousin, and who knows what else. So, if you see me out in public with blood shot eyes from a mental and emotional breakdown you'll know why.

 On the bright side of things, Ann Margret is still steadily gaining weight (although not as quickly as I had hoped), she is moving her extremities more and has started to move her head quite a bit (all this without any therapies yet... we won't get into that). I know for most parents these milestones go without a thought but for PWS kids this is an amazing accomplishment at her age. I can't wait to see what therapy does for her and her development as well as what growth hormone (GH) will do for her.

Happy 3 Month Birthday AM