Monday, April 20, 2009

Home and Doing Well

So with lack of sleep I haven't had time to update...We got home from the hospital last Wednesday afternoon. Grace had the worst night ever (sleep wise) last Tuesday night (while still in the hospital)...we got 3-4 hours of sleep, she just couldn't fall asleep! The good news was that she was feeling better, just couldn't sleep. Finally at 6 am she feel asleep. Then I heard her fussing at 7 and couldn't believe she was already up. When I looked a Doctor was by her AHHHHHH! We had had enough so when the pediatrician said, "What do you think, are you ready to go home or do you feel more comfortable staying one more day," the choice was easy...I couldn't get the words out fast enough...HOME! The grandma's stayed through the day on Wednesday so mom could get some sleep, poor dad had to work! The last few nights were much better. We all got some sleep and feel a little better. Grandma Kathy stayed home with Grace the rest of the last week so mom and dad could finally made it back to work.

Last Friday Grace had an appointment to get her ear mold for her hearing aid. We are pretty excited. It was a long wait for medicaid to approve it (over a month of waiting), but now we can finally go ahead with the ear mold. She should get her hearing aid in 2 weeks. Mom got to pick out the color which was fun, pink with pink glitter. I really hope Grace likes pink because she doesn't get much of a loves it and that is the way it is! We hope it helps and hope she doesn't hate it too much!

Other news...we got the report back from one of Grace's therapist. She did an evaluation before Grace had gotten sick to see the progress she has made since she came home from the hospital in November (she was 2 months old). Developmentally Grace is at 2-3 months, even though she is now 7 1/2 months old. It is hard to hear, but we know that Grace will be behind other kids her age. It is hardest when we are around other babies Grace's age...your mind naturally wonders thinking Grace should be doing those things. But we take one day at a time and are so happy with all of the things that Grace can do. We are so proud of how far she has come since we brought her home at 2 months old in November. We have seen huge improvements in the last 5 months...she is much calmer and is able to calm herself when she is upset. She is also babbling non-stop...she has so many stories to tell. She will give us little smiles and I cry nearly every time she does! She is working at holding her head up and is getting better. And new this week...Grace started tummy time and doesn't mind it too much! YEAH! We are so proud of Grace for all she can do and continue to get excited for every little thing she learns!

So for now...thank you for all of the prayers.

Monday, April 13, 2009

Not Home Yet

We have not made it home yet as things got worse before they got better. We had a terrible night; Grace was up crying nonstop. She was so miserable and there was nothing we could do to help her. She finally fell asleep around 5 this morning. We are all so tired. She was coughing nonstop and was just exhausted. This morning was bad too, but now she seems to be doing a little better. She is still on oxygen, but really only needs it when she is sleeping. We are in no rush to leave; we feel more comfortable being here with the Doctors when she is this sick. They have now called this sickness RSV which we hope she never gets again. I told Beau we are not ever going to let anyone near her...maybe that way she will stay healthy :). We are thankful that Grandma Kathy could come up today and take care of Grace while Beau and I got some sleep. We also got to go out for dinner while Grandma and Grandpa Harbort stayed with Grace. Grace had her first tornado drill tonight have got to be kidding all the kids had to go into the hallway. Grace was sleeping until that happened! Hope tonight is better! We have a great nurse tonight and are thankful for that!

Sunday, April 12, 2009

Not So Happy Easter

Poor seems that whenever a holiday comes around we are at the hospital. Halloween, Thanksgiving, a couple weeks before Christmas, and now we find ourselves here again on Easter. The last four days or so Grace has been battling another cold. I spent some time at home last week taking care of her but things got worse on Friday and we took Grace into her pediatrician. He diagnosed her with bronchiolitis. He prescribed steroids to help and said things should get better. But things only got worse and Grace's cough was so bad that she would turn bright red almost purple and not be able to catch her breath. We took her to the ER yesterday and spent 5 hours there until they admitted Grace to the hospital. She got their attention fast when she had a coughing fit and was having a hard time breathing. The first assessment was that Grace had pneumonia. I was terrified knowing that for kids with Emanuel Syndrome...this could be very serious. After coming up to the room different doctors took a look and think that her x-ray does not show pneumonia...they felt it looked more like RSV, because the symptoms get worse before they get better...but that test has come back negative. She had also had the RSV shots to help prevent RSV... So for now she seems to be a little better and the plan is to get her off of the oxygen today and go home tomorrow. The Easter Bunny did bring a basket to the hospital with candy for mom and dad, and a book, sleep sack, and little lamb for Grace. The hospital is always so great! I also hear that the "grandma and grandpa bunny" stopped at our house and left a surprise! Grandma Kathy and Papa Tim came back from their vacation in Florida and brought Grace the cutest princess outfit and sweater...she will look so cute in it! Mom and Dad's friends...Pete and Jenna brought candy for mom and dad and a cute bunny for thoughtful! So it has been a pretty nice day after all, but still can't wait to get home and for Gracie to feel better! Hope everyone has a great Easter.

Tuesday, April 7, 2009

Hip Hip Horray, I am 7 Months Old Today!

I can't believe that Grace is 7 months old...time flies! To bad she was sick with a cold. Mommy got to stay home with her and is glad she is feeling a little better. Grace is doing a few new things. She is constantly babbling which is so fun to hear and watch! She continues to work on holding up her head...and today she even laid on her tummy and lifted it up for a short time. She used to hate her tummy time! Sleeping has some sort of pattern...usually. She gets to sleep by 10 and then is up by 1am. Awake for an hour or two. Then up around 4 or 5. So we do get some sleep. Car rides are better! She has learned to fall asleep which makes for a much more relaxing ride. Although Grace still loves to bounce on her exercise ball...we don't have to use it much anymore. We usually bounce her to sleep, she still won't fall asleep on her own yet. Grace loves bath time! We are looking forward the weather warming up so that we can take her swimming! Grace is concentrating on people more and watches us when we walk by or walk away from her. She is also starting to act like she wants to roll over...arching her back and raising her arm way cute! Take a look at Grace's new bib mommy got true!

Dear Grace,

You have been through so much in your short little life. You are such a fighter. There have been some very hard days but mommy always gets much better. We are so happy that you are finally able to enjoy being here with are our angel! Happy 7 months! We are so proud of everything that you can do and we love you!


Mommy and Daddy

Sunday, April 5, 2009

A Wonderful Weekend

We had a fun weekend. It was Grace's cousin Mason's 1st birthday. We had to drive to Menomonee Falls for the party. If you know Grace, you know that the car is one of her least favorite things. But lately, around 5 months, Grace has changed. She is doing much better on her car rides. But we were still worried because this ride was going to be about an hour and a half! AHHHHHHH. We are excited to report that Grace had no tears...NONE. She slept and looked all around both ways. It was so exciting for us! She sure has come a long way. That was not the only exciting thing that happened! Grace doesn't smile too often, so when she does it is very exciting. Grandma Great caught a smile on her camera! It was so great. What a fun