Sunday, December 12, 2010

So Behind Again

Wow I can't believe how fast time goes by. I find myself never having time to do anything at all. I need to put somebody else in charge of Irelyn's blog. So many things have changed I don't even know where to start. Let's see she has been doing so amazing since starting her Growth Hormone Shots (GH). She is getting so strong. She got her Mic-key button out on the 7th!!! For those who don't know, that is her feeding tube. It is GONE!!! YEA!!! I never thought that would happen. What an emotional day that was for me. I cried, happy tears of course. She never took a bottle so it has been hard getting her to learn to drink from a cup. For awhile we were using a special cup that her OT ordered for her, it is called a nosey cup. That means it is open and has a little cut out part on one side. We would hold it for her and control how much milk she would get at once. Well as of November 10th, she can do a straw cup all by herself!!! She holds it and figured out how to suck. We couldn't believe it. Tears again. She learned how to suck. She never knew how to do that. :) She is getting to be such a big girl.

She is able to sit herself up from a lying down position. This also is huge for her. It took her awhile to figure that out. I think a lot of these things happened because we increased her GH at the recommendation of Dr. Miller in Florida. We went from her normal 0.4mg to 0.6mg. We started that on November 8th, and then all these positive things started happening! It is incredible. She is so close to pulling herself up on the furniture too. It is so neat to watch her do new things everyday. She is so strong.

Irelyn also became a big sister on August 4th, 2010. Yep that is right! Ryleigh Leann was born August 4th, weighing in at 7lbs 1 ounce, 18" long. She came out screaming! She is so beautiful. Her and Irelyn are 11 months apart to the day. Irelyn was born September 4th, 2009. That is so neat. Things are a little hard and stressful right now but I am sure they will be great friends. Ryleigh is a good baby other then she is a little cranky at night for some reason. This is something fairly new and hopefully it doesn't last too long. She is so adorable. I will have Jeremy put some new pictures on here as I am not responsible for that part. I am supposed to do the updating and you all see how terrible I am at that.

One of my New Years resolutions is to try and do better. I still have bad days and get very emotional and cry often. I think if I updated this more it would give me somewhat of an outlet on how I am feeling. I need to vent somewhere.

I am getting off track here. LOL! November was a great month as we were fortunate enough to get to take Irelyn to see Dr. Jennifer Miller in Gainesville Florida for the first time. She is a PWS Specialist and has over 200+ patients she manages with the syndrome. She was incredible! It was the BEST appointment Irelyn has ever had. She is the one that increased Irelyn's GH, and also started her on some supplements. One of those being L-Carnitine which has improved Irelyn's energy level greatly! We are so pleased with Dr. Miller. We are going to follow her yearly. She is an endocrinologist. Irelyn will continue seeing her endo locally, but will also see Dr. Miller. I think it is a good idea to have a multi-disciplinary team in place for Irelyn who are all very knowledgeable regarding PWS.

Irelyn has her second sleep study this week on Thursday the 16th, and I am a little worried about it just like I was the first time. She passed her first one with flying colors, no apnea, completely normal sleep study. However once they start with the GH shots, they can develop sleep apnea. So, I feel like just when things start looking up, something is going to happen. Please pray that she passes this one too and that apnea hasn't developed. We are praying that everything looks just as great as it did with the first study. Oh how can I forget, obviously since her feeding tube was removed, her last swallow study she had in November showed no aspiration. They cleared her to quit using her thickener as well! So for almost two weeks now she has been drinking her milk without any thickener!!! She is making such wonderful progress. Thank you if you made it this far to get my update on my precious girl. It says I haven't been on her for 7 months. Oops....I will try to do better. I know I say that every time, but I really am busy now with two little ones 11 months apart. LOL

Wendy and company


  1. Sounds like things are going great!!! Glad to hear its all going so well!! We'll say a little prayer your sleep study goes ok!!

  2. Thank you so much! I am always nervous when we have more tests to do. I feel like we get through one hurdle and then it is on to the next.

  3. I hope your study went well! I have family that live in KC area - Kearney, Liberty, and downtown KC, that I visit about once a year. Our girls are very close in age; maybe we can visit one of these times when I come up there.

    Do you mind me asking what other supplements Dr. Miller put your daughter on? We had to add carnitine at the last visit and I'm surprised we haven't had to increase her GH yet. I'm just curious what someone else her age is doing.