The Month of April...

This month was a tough one for me. I found myself in a slump most of this month but I seem to be making my way to happyville again, at least I hope.

Miles and AM both caught colds of which AM got an antibiotic and Miles restarted his nebulizers. Luckily both only lasted a few days. AM has started all three therapies (OT, PT, ST) this month, which has greatly contributed to my stress. Schedules are hectic these days and I always feel like every time I turn around I'm handing someone else money. I know this will get better when KATIE-BECKETT is approved. Therapy seems to be going well so far. We have been going to PT for a few weeks and I really like her therapist. She improves so much each week for PWS baby. OT opened my eyes to things I would have never considered. For example, tracking... I thought she was doing fairly well, I never thought about tracking in different positions such as sitting or side lying. Since we have become aware we have been working on that and she is improving pretty well. We just started ST (feeding therapy) this week and I'm hoping we will not move backward. We will just have to wait and see.

We celebrated AM's first EASTER this month too. Although she didn't participate much it was a nice week with family. Thursday we went to Miles' preschool Easter egg hunt. He could stay away from the pond. I guess I should be grateful he would rather throw rocks than eat candy. Sunday, Mitchell lead the Sunrise service (or SONrise as our church refers to it) so he missed our Easter morning fun. After church we headed to Thomaston to eat lunch and hang out with Mitchell's family then headed to mom and dad's for dinner. It was a busy but fun day. I hope Miles grasp "Jesus came back to life on Easter," more so than the easter bunny. We will have to wait and see.

AM turned 6 Months old on the 26th. I can't believe it has been that long ago. She has come so far and even though she has a long way to go I am so proud that she is as strong and healthy as she is.

some of this and that!

Well, AM is now 5 months old. She is growing so fast. Last time she was weighed was a little over 3 weeks ago and she was 11 lbs 6 oz then. She is probably well over 12 lbs now.

Good News, her sleep study was NORMAL. Although she did display some central sleep apnea it was all within normal range. THANK YOU JESUS! We won't have to do another sleep study again, well, unless she starts having problems.

AM- 5 months

Last week Mitchell was out of town on business from Saturday til Wednesday. Needless to say, it was quite stressful. I feel for all of you military moms and dads who do it on your own, often for long periods of time, not to mention single parents. Thankfully that doesn't happen often for our family. When he got back we wanted to do something fun since it was Miles' spring break. We decided to go to the zoo. Miles had a blast once her warmed up, of course. 

Flamingos 

Parakeets

Elephants

Meerkats 

 At the Giraffe and Zebra exhibit both absent for the photo. The Giraffe was MIA anyway.

Miles roaring like a Tiger

Our favorite for the day, the Gorillas. We caught them at snack time.

Pandas

Kangaroos, Miles does a great impression of them.

We had a great day! It wasn't crowded and the weather was great and Miles loved it.

In other family news... AM will be a BIG sister in November! 

It definitely was GOD! I can't imagine how life will be with 3 especially with all that we are doing with AM. God is definitely working on me giving up control over life. I am trying to let Him take over but it is a slow process. Please be in prayer for our family as we decide what to do with the house, finances, jobs, and most importantly for me schedules. I know that one day we will look back and miss these times and see how amazing God worked but for me looking ahead I am anxious and stressed. We appreciate all the encouragement and prayers.

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