I am incapable of dealing with people!!!

So my husband and I went to see a piece of property with a realtor Wednesday. God love her, she was probably mid-60's, heavy smoker, big hair wearing nice enough lady. But for the love of God, did she have to go on and on about how small my baby was, and what I needed to do to fatten him up? Then she proceeded to tell me, do you know he has a lazy eye? Then she told me how to fix it. I guess she was just trying to help me with her experience, but OH MY it was hard to be sweet and just ignore it all after awhile. I tried changing the subject several times. I had him in his little Peanut Shell or she probably would have commented on how floppy he is and how I could fix that. I got so aggravated, I wasn't even interested in the property. The experience soured me on it.

Its hard to listen to people who look at your child for 15 seconds and tell you how it is. When all you really want to say is, yeah, um we've noticed these things and are working on them. WE ARE NOT BLIND. We do not starve him, I promise. The lazy eye doesn't concern me ma'am not nearly as much as the hole in his stomach we feed him through, or the fact that he can't hold his head up at nearly 8 months, or the scary food and behavior issues I'll get to see in the future. But I guess it just makes you feel better to share your wisdom - but please God - just never again to me.

Growth Hormone may be sooner than we think

We have a follow up in April with Dr. Hardin's office in Columbus. We understood that would be when we learned how to administer the HgH. I got a call from Dr. Hardin's nurse that they are sending out a starter packet with it directly to us and that we would learn how to administer it from a nurse here in our area! I'm excited, but scared too. I hope that my husband and I can get good at giving nightly shots. He will be 8 months old on March 17th. I hope we get it before then.

Sleep Study - Normal

Yay!!! I am so excited to report that our sleep study was normal & we are on our way to HgH.

Little man is doing well! He saw the PT for the second time last night and despite being grumpy from his RSV shot earlier in the day, he did fairly well.

We talked about ordering a stander to help him with weight bearing. The PT was helpful & gave us a new book to peruse for new exercises to try with him.

His sleep study

Isaac's First Swim

Great Appointment!

We just got back from our appointment at the Prader Willi Clinic with Dr. Hardin & it was very uplifting. She gave us an entire speech about how PW kids can't be compared with PW children of the past. There is so much progress with Human Growth Hormone and we cannot place a limit on what our child can do. It was a great attitude from a physician. Normally they are all so negative!!! The sleep study wasn't all that fun - I'm not sure I'll ever get the glue out of that poor boys hair. We have to go back in 2 months to learn how to give the shots. It was an uplifting appointment for once.

Progress

Isaac has been doing so well these last couple of weeks it really has me inspired. He is now up to almost 14 lbs and he is getting closer and closer to head control! He seems to do well for longer and longer, until finally he has to give up and flop it to the side.

We have also been working on strengthening his back and trunk with sitting him up and using the exercise peanut ball to bounce on.

We have practiced rolling him over and over which he thinks is hilarious - so hopefully he'll learn to do that on his own one day!!! Right now he just thinks its funny us flipping him every which way. I'm just thrilled to see progress & I can't imagine how great it is going to be when the physical therapy starts!!!

Prader Willi Clinic Appointment

So we have our first appointment with Dr. Hardin this Friday - we are terribly excited. Not too excited about the sleep study the night before, but we'll manage. We get to meet with an endocrinologist (Dr. Hardin), a geneticist, and dietician. I really hope they are positive and can get us on the path to treatment with human growth hormone as soon as possible.