Sleep Study and More

So, we had another Sleep Study Tuesday night to see if Delilah's central sleep apnea has gotten better. Well, it is getting better but it isn't gone yet. The doctor said it looks like it is improving with age and growth. So for now she will still have to have oxygen at night. Bummer. I get really nervous about the oxygen because she likes to yank it off and get her arm wrapped up in it. I'm gonna have to figure out a way to keep it in place. The nurse taped it down during the sleep study, but she still managed to wiggle the nose piece out. My little Houdini. We have another study scheduled for mid July. Hopefully John will be back by then. I would love to pass the honor of attending on to him. Odd enough, there isn't much sleep during a sleep study. 

On to more news...MILESTONES! Little missy has been doing so wonderful these past few weeks. It seems like a switch has been flipped in her. She is just a different baby. Where to even begin...

• She has mastered her head control. No more floppy neck! She has also improved greatly in her trunk strength. I love being able to carry her on my hip with one arm.
• She is a rockstar sitting with support. Even better, when the therapist was here today she sat, unsupported, for over a minute. It looks like she will be sitting on her own in no time, now if we could get her to sit up. 
• She can roll over, both front to back and back to front, but it seems she isn't as interested in it anymore. She would rather work on sitting. Not to worry, we still work on it. 
• She loves to bang toys together. I wasn't aware this was something to work on until Sally asked about it. She gave Delilah some blocks and she did it without any prompting. Now I give her block like toys (I haven't found small enough blocks for her little hands, yet) and she loves it.
• During tummy time she is lifting head and reaching out for toys with both hands. According to the therapist from early intervention, she is beginning to push up with extended arms. This is the first step towards learning to crawl. We were given great tips to work on gaining the strength in her arms needed to crawl. 
• As you may have seen in the pictures from a few days ago, Delilah is working on finger foods. She loves the biter biscuit (messiest food ever!!!). I have been introducing bananas, avocados, yogurt puffs, and peaches. She really loves the peaches. They are a bit slippery, so I have to wrap them in cheese cloth. This works great for her because she gets a handle of sorts. 
• More on sitting/trunk control: while sitting in her high chair, she has begun to pull 'up' using the tray, so that she is in a sitting position without her back against the chair. She loves doing this. She also likes rocking back and forth in the sitting position.
• She loves to be in her exersaucer now that she can touch the floor. It is a little different than the traditional model, as it has a seat that revolves around the table. She will get excited and kick those little legs and she will move the seat. This will excite her even further, and before I know it, she has circled the table. Such a smart little girl. 
• My little girl loves to babble and giggle just because, but I, along with Sally, are beginning to see her babbling with objects and people. She started babbling to a puppet is Sally's office. So cool.
• We have been using the Baby Signing Times DVD's that Ms. Janet got for her. It teaches simple signs that I try to use where appropriate. One that I use a lot is "all done". Basically, I raise both hands and turn them back and forth (probably not the most accurate description). Well, today when she was finished with breakfast I signed "all done" and I swear she raised both her hands like me. She didn't turn them back and forth, and it may not have meant it was the sign, but I was a little awestruck. 
• Her second tooth has broken through, so the lonely first tooth now has company. It explains the amount of drool lately. She really enjoys blowing bubbles with her drool. Very lady like!

I cannot begin to tell you how amazed I am by her many accomplishments. It seems like she is learning something new everyday. She is the smartest, strongest, most beautiful little girl ever, but I may be a little partial. I am so thankful she is mine!

Well, it is past my bedtime. Delilah is already there so it is my turn. 

**A bit off topic, but I have begun planning her 1st birthday party. Yes, I know I have three months, but I will need every bit of that time to pull it all together. I also know that she is only gonna be 1 and she won't remember the party, but I will. Let's be honest, this party is as much for me as it is for her, and turning 1 is a huge deal! I have always dreamed of having a little girl and the fun stuff I will get to do for and with her. This is just the first of many crazy, over the top celebrations we will have for this beautiful miracle in my life. Luckily, I am pretty thrifty and crafty, so most of the decorations will be cheap (something my husband will be thankful for). Ok, really going to bed now. Good night. 

Happy St. Patricks Day 2010!

Just a few pics I took yesterday to celebrate. Unfortunately, we had a sleep study last night/this morning so she couldn't wear her outfit today. More on the sleep study later, when I finally get some sleep. But I had to post these pics today. Enjoy!

All Photos...Enjoy

PWS Shows

There will be two shows that will involve Prader-Willi. The first is 'Mystery Diagnosis' on Discovery Health Channel, March 22nd at 10pm eastern. It will feature an adult with PWS. It should be interesting.

The next show is ABC's Extreme Home Makeover airing May 2 at 8pm eastern. It will feature the Starkweather family who have three sons, one of which has PWS. I am very interested to see how they outfit the kitchen to prevent food seeking. Maybe I will get ideas for my kitchen. Delilah may not be a food seeker, but it doesn't hurt to be prepared. I will do anything to keep her safe.

I encourage everyone to watch and tell your family and friends. We need to get the word out there about PWS.

And so it begins...

We have entered Teething territory. This evening, while playing with Delilah, I noticed a little white sliver on her lower gum. After closer inspection I came to realize that this sliver is her very first tooth. And let me be the first to tell you it is VERY sharp. I cannot believe it. She seems to young for this to start happening. I know she is 8 months old, but I was really hoping this would be delayed until Daddy gets home. No such luck. I am excited though. I know it won't be easy to deal with, but I can't wait for all the toothy grins we will get to see.

Now on to the information I am sure you are all eager to hear about; we had a great visit with Dr. Miller on Monday. She is absolutely wonderful and I am so glad she is Delilah's doctor. First, Delilah is now weighting in at a whopping 15 pounds 2 ounces and 26.75 inches long. Dr. Miller says this is wonderful. Apparently there are several different Stages for PWS, and Delilah is in Stage 1b which is the golden stage. The next stage, 2a, will be when she starts gaining excessive weight for no reason; i.e. no change in diet or activity. Her body will just start to absorb more of the calories then before. This can happen as soon as 18 months or as late as 4 years. It just depends on the child. Luckily she has a nutritionist/dietician on staff who has figured out a precise diet that works wonderfully for PWS children. It is such a blessing to have such wonderfully specialized people to help us fight the weight gain. I cannot begin to tell you how thankful I am to have found Dr. Miller for Delilah.

We will also be starting Delilah on Carnotine, a supplement to help with muscle development. Dr. Miller believes she may have a deficiency based on watching her eat her baby food. Delilah tends to get droopy eyed while eating, but will wake wide up once finished with bottle/food. She said that we should see a noticeable difference in her within 24 hours. She should be doing something she has never done before. I am hoping for sitting on her own. She is trying, but not quite there.

The stage I dread the most is stage 2b. It is during this stage that she will start the food seeking and insatiable appetite. Luckily, Dr. Miller has recently come across a drug that should help decrease the food interest. It is a drug commonly used with type 2 diabetics and it only seems to work with the little girls. It is unfortunate that it doesn't work for the little boys, but hopefully one day something will be found.

All in all it was a wonderful first meeting. We learned so much and I feel so much better about the future for Delilah. Before this meeting I had so many questions about what will be, but now I feel more confident and reassured that Delilah will be able to lead a somewhat "normal" life. We will continue working with her via emails and phone calls,  and we will be visiting her every six months.

Well, that is all for this post. I will try to post some pictures soon.

Happy Valentine's Day 2010

Here's some pictures of Delilah's first Valentine's Day. Not a big 'to do' without Johnny here, but I did dress her up for the occasion.

We will be traveling to Florida Thursday to see Dr. Miller. I can't wait to meet her. She has been such a blessing in our lives. With all the stress we have been dealing with concerning TriCare, she has been able to lighten our load. I will keep you all posted on the visit. My mother will be coming with us, so there is no doubt that there will be plenty of note taking. 

7-Month Update...sorry so late

I'm sorry I haven't updated lately. I am having a problem with motivation...I don't seem to have any.

Delilah is now 7 months old. I can hardly believe it. We had a weight check and she came in at 13 pounds 12 ounces. She is gaining about an ounce a day, super glad to hear. She also measured in at 26.25 inches long. This makes finding clothes that fit her very difficult. Length wise she fits into 3-6month clothes, but width wise she is still in 0-3months. I guess I will be safety pinning her pants again. Luckily dress season is just around the corner...hopefully.

Her biggest achievement happened in Therapy last Wednesday. She rolled from tummy to back all by herself, 3 times!!! I was so excited. I actually teared up. Even Sally was blown away. The progress she has been making is extraordinary. She loves tummy time now. She lifts her head high and will hold it, until she decides to roll over. She is trying very hard to roll from back to tummy. Soon! Still having issues figuring out what to do with the arms. She also likes sitting up more. I put her in her Bumbo chair or high chair and she beats on her little piano.

Her personality is beginning to really shine through. She is always smiling and babbling to herself. Every morning I wake up to her babbling up to the butterflies that hang over her crib. She likes to make noises at me while she is eating. She is also grabbing at her spoon and holding her bottle all on her own. This makes meal time very messy, but I guess I have to get used to that.

I can't say this enough...I love this little girl.