Wednesday, June 30, 2010

Much Better!

Tonight went so much better! I decided to go ahead and give it in his bum instead of the leg. I had been afraid to because he is still in diapers and with the neutropenia, didn't want to end up with infection.

Tuesday, June 29, 2010

Day 6, Fifth Dose!

First, we had our evaluation with STEP (Early Intervention) today. This was the third evaluation they've done and he has never been far enough behind to qualify for services. That is, until today. His communication scored at 16 months and physical scored at 18 months, so he has two areas with a 25% delay, and we will be going forward with a plan of action next week.
Tonight's injection didn't go so well. I decided to try using the needle guard to see if that helped. Nope!! Not at all! I actually think it made it worse. I am not even sure he got the dose and the needle was bent to almost a 90 degree angle. Definitely NOT doing that again!! Much easier when you can actually see the needle and make sure you have it where it is supposed to be while giving the medication. Then, I went to put the needle cover back on (like they showed me) and it stuck through the cover and poked my finger. Now, that one actually did hurt!!
When I told Shawn about it he laughed at me and told me that a little growth hormone wouldn't hurt me any. :-( LOL!! Stinker!!
That's our news for today. Hoping tomorrow's injection goes much smoother than tonights. Praying that this gets easier!! They say it does, and I believe it will as long as I continue to remind myself that I can do this and it is something he needs.

Change of Plans!! So Excited!!

So, we have decided to drive instead of fly to Chicago. We will stay with friends and family along the way. It will be so much cheaper to drive rather than fly, and with driving we are already almost half way there to having enough to pay for our gas. YAY!!! Now we know that we are definitely going. We were looking at about $1500 for plane tickets and we can drive for about $800 or so. That's figuring the lowest possible gas mileage and adding about 500 miles onto each end of the trip. I am going to talk to a couple of the agencies around town to see if they can help us out.
Daylon did really well with his shot last night, a couple whimpers and he was fine. He has an evaluation with STeP today to go over his speech development again. He still only uses probably 10 words consistently and knows probably 30 words, when he wants to use them. I will let you know what we find out.

Saturday, June 26, 2010

Day 2-4 of Growth Hormone

Daylon is being such a champ with this. He had his injection last night and cried a little bit, but he also kicked his leg out when I gave it, which bent the tiny little needle, but when you are dealing with a 31 guage needle that is not hard to do. So all in all, we are off to a great start.
Saturday, day 3, went well. No bent needle and only a few tears.
Sundays are his days off from shots. He only gets them six nights a week.

Thursday, June 24, 2010

A Fabulous Day!!

What an exciting day at our house!!
We got our Dr. H time slot! We will see her the first day of convention at 5:45pm. They will email me a spreadsheet to fill in with Daylon's measurements since birth (I think). I plan on sending his lab work along with that too. It will be so interesting to get Dr. H's opinion and thoughts.
And the most exciting news of all!! We had our training session this afternoon for the Humatrope and Daylon got his first dose today! We learned how to mix the medication and prime the pen device. The nurse also had us stick ourselves with an empty syringe that had the same gauge of needle on it, just so we knew how it feels. It is only a 31 gauge needle, so very tiny. They actually call it the invisible needle and it really doesn't hurt. There was a little sting after pulling the needle out, but not bad. Although, I will admit that I don't know whether or not the medication stings. I don't think it does though, because Daylon only whimpered right after I stuck him with the needle. No tears at all!! What a big boy! Praying this is our answer, not only for the growth but the other medical issues as well!
Please keep praying with us that funding comes through for our flight to Chicago! We appreciate you all so much!! Thank you for everything you have done!
Love & Prayers,

Wednesday, June 23, 2010

Lots of Updates

Sorry it has been so long since our last update we had family in town last week and were very busy visiting.

The not so great news:
I have not heard back yet on our appointment with Dr. H.

The wonderful news:
HRC called us last Thursday to let us know that our insurance approved Daylon's Humatrope and to set up shipment. We received his Humatrope on Tuesday and we are now waiting for our appointment with the trainer. We are tentatively set up for training tomorrow afternoon at 4:00pm. There is a possibility that she could squeeze us in to her schedule today.
We had a family reunion this past weekend and received $300 in donations towards our MAGIC trip!!!!

Interesting tidbit:
We got to visit with my mom and sisters from Houston this past week. Which also means we got to see our nieces that we haven't seen in almost two years and the youngest we had never met. We have three, two of which are very close to Daylon's age. One is three days older and the other is five months younger. Daylon reaches the one who is three days older at the shoulder, and the one who is five months younger is probably five to six inches taller than him.

I want to thank all of our supporters and followers for all of their prayers and encouraging words as we go through this adventure.

Tuesday, June 8, 2010

A Little Bit of News

We got our registration all in for MAGIC, and got our letter yesterday giving us our confirmation and the time slot to meet with Dr. Simmons (the dentist). I found a number for an agency that may be able to help us offset some of the cost of the airline tickets, but I am waiting to hear back on our appointment time with Dr. H to schedule it. It sounds like it will be in the evening sometime. I will be calling the airlines here in a little bit to get an idea of what we can do. I am also looking for ideas for local fundraisers that we can do. Thanks for any input.

We are still waitng to hear from the drug company so we can start Daylon's growth hormone. Hoping that all goes through soon, so we can get started on it.

Wednesday, June 2, 2010

We Got the Scholarship!!!

I just got an email from MAGIC!! We got the scholarship!!!!! YAY!!!!! Now we just have to raise the money for the plane tickets to get there. On Travelocity right now, they are right around $512 per person. Well, off to sign our acceptance letter and fill out the hotel reservation form, and get it back to them ASAP!! We have to get it in soon so we can get a slot with Dr. H. I can't wait!!
Oh I almost forgot! I found this really cool widget for donations on a friend of mine's adoption blog (THANKS ASHLI!!) that shows how much we have raised so far, so I switched to it so everyone can see our progress as time goes on!!

Tuesday, June 1, 2010

The Why....

Some of you may be wondering why we are going to put our son on growth hormones when we have no concrete proof that it will help him.
My questions to you are:
Have you been in my shoes?
Have you ever been asked how old your child is and then when you tell them, get the really, he's soooo tiny comment and the look that says do you feed that child?
Have you ever been in the pedi's office and see a cute bubbly little girl about the size of your son only to find she's 10 months old while he is 23 months old?
Do you know what it's like to lie awake at night wondering what you are doing wrong? Why is my baby not growing? Why is he not eating like the others did? What am I doing wrong?
Do you know what it's like to constantly worry about what little cold is going around now, because your child's immune system has a hard time fighting things off?
Do you know what it is like to hear everyone say, "Oh he'll catch up. He's fine." when you know in your heart that something is not right?
You start to internalize everything. No it is not my fault that my child is small.
So the why, Why not? Why not do everything in my power to help my son? Why not?