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Friday, January 30, 2009

Good Week!

This has been an encouraging week all around. Gracie has shown a lot of improvement and her pleasant disposition makes it hard to feel anything but optimistic about her diagnosis. She has made great strides to crawl and is moving around and rolling a lot more than before. It's like she knows what the Dr's said and are trying to prove them wrong. She just AMAZES us everyday!







We took her to her 9 month check up on Thursday and her pediatrician spent some time going over the neurologist report with us and was just very pleased with her development. She seems to be on point with every thing other than the delay with her motor skills on her right side. Gracie weighs 18 lbs 4 oz. and is 27 inches long. So she is in the 50th percentile for babies her age. We just are very encouraged by that Dr's visit and are looking forward to getting her started in PT. Her evaluation is this Wed. so I am guessing we'll have a better course of action on when and how much PT & OT she will need.










Gracie had a great reunion with her buddies Sophia and Jack. Sophia and Grace are just one week apart and Jack is a little firecracker who was born on the 4th of July. Their mommy's and I enjoyed being pregnant together and have had the pleasure of having play dates since they were newborns. Sophia and her mommy moved to NY recently so this is the first time seeing her in a few months. They grow so fast! As you can tell it is hard to get three babies to all look at the same camera. Here are just a few of them.



I love this one with Jack trying to stick his finger in Gracie's ear. I don't blame the fella. He was put between two little girls! Aren't they just precious??










Here is my favorite video of the week. She has been saying different words like MaMa, NaNa, Dog, but this word is by far her favorite and most spoken! Enjoy! Hope it brightens your day like it does ours!





video

Wednesday, January 21, 2009

My Baby is 9 Months old today!


HAPPY 9 MONTHS GRACIE!



I can't believe Grace is 9 months old. I can remember the day she was born like it was yesterday. She is so amazing. She is our joy! And the news that we received one week ago doesn't change that in the least bit. She is still our perfect little girl. Her smile lights up our world!

We've been dealing with so many emotions this week and it still feels very surreal to say that our daughter had a stroke. However, God has given us strength and continues to. We've been able to find some great resources and actually have been able to speak to some parents who are walking through what we are. We can't say enough how much we appreciate all of your thoughts and prayers. We know how loved Gracie is and I know she feels that too!




Here is a picture of her and her daddy. She was the only girl allowed during the NFC championship with all the guys.














Here is Gracie in her cousin Ricky's hat trying to eat his phone! I can give her any chew toy out there and she prefers the cell phone. Hopefully by the time she is ready for a cell phone she will outgrow this habit. :)









She wants to crawl so bad. This was her attempt to get Ellie Mae's toys. She stayed up on all fours for a few minutes before she toppled over. We are so proud of her and her determination. She surprises everyday with the new things she is doing.



Tomorrow we have to take her to get a bunch of blood work done. We are also meeting with the VA Beach early intervention group to set up her consultation and hopefully get her PT & OT started soon. She has a EKG scheduled on Feb. 24th. That is the latest for now.

Thursday, January 15, 2009

Our little Miracle!

This is a very hard and emotional blog for me but I know how much all of you love our little girl and have prayed and are praying for her. First let me say that God's strength and love is so amazing. We prayed and prayed for a baby and he gave us the most special, most beautiful little girl. We are so blessed to have Grace in our lives.

As many of you know we met with the Neurologist today. He was great. He spent over an hour with us explaing the MRI and all the technical terminology in a way that we would understand it. Although it is not what we were expecting, we are very thankful to have such a caring, knowledable Dr. And for those of you that don't know, my sister is a Neurological Psychologist so I asked her to come with us and I am so glad we did. Halfway through the appt. both Matt and I shut down. Me mainly out of shock and trying not to break down and Matt out of anger and denial. She was able to ask some questions and explain to me and Matt alot of what he was saying. So here goes:

The MRI showed that she had a stroke, most likely before she was born. Unfortunately, there was damage to the left side of the brain permenantly affecting her motor functioning. She was given a diagnosis of hemipalegia cerebral palsy which means that she will have some motoric problems on the right side of her body. The good thing is this is not something that will get worse and fortunately it typically responds well to physical and occupational therapies and we will know with time how much of an impact this will have. Given that she has some movement in her right side and is able to stand and put weight down, it is likely that she will be able to walk, it just may take longer for her first steps.

We believe God is the ultimate physician and healer. We are praying that God's will be done in Grace's life. We believe he has a GREAT plan in store for her. It is a miracle she even survived a stroke of this magnatude. She is our little MIRACLE and we know now why God wanted us to name her Grace. Thank you all for your prayers. We pray that you continue to pray for her and for Matt and I as we are still trying to process it all.

We love you all and thank you so much for your love, prayer, and support!

Monday, January 12, 2009

Our little Trooper!

Today was Gracie's MRI. It went very well! Praise God!! They gave us an option of an oral or IV sedative and of course we chose the oral to avoid the painful IV. She had to drink this nasty stuff which was the worst part. She DID NOT like having her face held and the medicine being administered. She was screaming and crying for a few minutes but then I held her and she fell asleep in less than five minutes. They wheeled her away and told us she would be done in about 30 minutes.

We went to the cafeteria and grabbed a snack and by the time we came back she was awake. Bless her heart she was sooo out of it and "drunk" acting. They tried to give her some pedialite and Juice but she wasn't having that. So they let me nurse her. When Matt took her from me to burp her, she threw up all over him (I mean exorcist style) but they said that was normal. They gave her an anti-nausea medicine and she went back into a deep sleep. Then the nurse tried to awake her with a cold washcloth and she was still not waking up but responding by moving and making faces which was a good thing. All the nurses loved her and said what a happy, beautiful baby she is. It was funny because they wouldn't let me feed her past 9:45 this morning so every time she would look at me she would do her little hunger grunt. I couldn't even hold her without her trying to "latch on".

Overall we were there for about three and a half hours and Mommy held it together, surprisingly enough. They gave us some paperwork for things to watch out for but overall the side-effects aren't as bad as I thought they might be. She has been asleep pretty much since we got home. They said she might sleep good tonight and she might not. I guess we'll see.

Thank you so much for your prayers. We are continuing to pray that the tests come back showing nothing more than muscle weakness and all she will have is physical therapy. We have to wait a few days and then we are going to see the Neurologist.

Here is a picture of her knocked out after being awake for only a short while. I couldn't resist. I love the little hospital gown (which she only had to wear because mommy forgot a change of clothes) She is so precious when she is sleeping...like a little angel!

Friday, January 9, 2009

MRI scheduled

The nurse called to let us know that Gracie's MRI is scheduled for this coming Monday at 1:45 pm at CHKD. She went over her medical history and gave me the schedule for when she can eat and have fluids. My biggest concern now is the sedation and the risks. Thankfully it's a mild sedation and not anisthesia. There are risks but apparently they will go over all that in detail before we sign the waiver. They said the entire process from when we walk in to when we leave is about 4 hours. The sedation requires an IV which will be tough but Gracie has had a few of them in her lifetime. I just don't like the fact that she will be drugged. The nurse said she will be very "drunk" after she wakes up and depending on her reaction she could be extra fussy or could be happy. She is a very happy baby so I'm going to claim that she will be happy! Either way Monday is going to be a hard day..probably more so for us than for her.

I've had so many people offer up prayer for her and for Matt and I and I just want you all to know how much that means to us. We believe in prayers and we know Grace is God's child and he has her in the palm of his hands.

No matter the outcome we are so thankful and blessed to be given such a wonderful gift. We are just in awe every day that God trusted us with Grace. We feel so humbled by his generous gifts and His "Grace" in our lives.

Thursday, January 8, 2009

New Year..New Goals!



I have decided to join the cyber-world of blogging. I feel it will be a good outlet for me to express myself and also a great way to keep everyone informed about what is going on in our lives. New Year...new goals! One of those is to keep in better contact with all my friends and loved ones. I really value my relationships but it's hard as a new mom to really keep in touch with everyone like I use to. So please see this as my attempt to connect.

So with that I'll touch on some recent events in our lives:




Gracie's first Christmas was a very memorable one. We had all our family come here so she could spend her first Christmas in her own house. Christmas has always been special to me but I believe from now on it will be even more special as I am seeing it through the eyes of my child.

Matt's business has been booming despite our economy and we are very thankful to God. He worked very hard and long hours over the past few months so it was nice to have him take a few days off and spend it with Gracie and I.

We've noticed for the past few months that Gracie favors her left hand, which to us didn't seem to warrant any concern. However as she is developing quickly in all other areas (talking, laughing, interacting). We noticed her right hand stays balled up and it appears as if she doesn't even know she has it or use of it. We've had her on her belly more too to encourage her to crawl and have recently noticed her right leg not moving or bending like her left one. So just to be safe we took her to the Dr's.

The Dr said it could be a number of things from muscle weakness in her right side to something neurological. So they have ordered her a MRI and she is going too see a Neurologist either tomorrow or early next week. They are also setting up physical therapy to strengthen her right side. The Dr isn't too concerned because she does have definite movement and control it's just not up to par with her left side.

Many of you remember that Gracie had some breathing issues when she was born and had to stay in the hospital for 10 days to receive antibiotics for an infection that they never found the cause for. She had a spinal tap at 10 hours old and numerous other tests. They determined she had reflux but that wasn't what had caused her breathing episodes. The Dr is now saying that she may have experienced some kind of shock in utero and that we are now seeing the results of that 8 months later with the weakness on her right side. The believe that is probably caused the mysterious episodes after she was born.

Either way, we are thankful to have Dr's on top of things and she is going to see the best pediatric neurologist in the state. We know God has her in His hands and she is going to be fine. We are just a little uneasy about them having to sedate her for the MRI as there can be complications from that. So I would just ask that you keep her in your thoughts and prayers and I will keep you updated.