January 20

Well, this is something new... Blogging. Hmm. I could get used to this.

So here is our family's page, full of the most recent updates... most of them are about Abby. This might be easier for those of you who haven't visited the CarePage.

Today the munchkins are sick again. Fever, coughing and runny noses. We are hanging out at home.

Exciting news to add! Patrick felt Josiah's first tooth cutting through on the bottom! Poor baby has been fussy and gnawing on his fingers and drooling galore. We can't wait to see how cute he will look with teeth. He's also started climbing stairs. Clapping is his new favorite thing while giving the biggest smile you've ever seen. He is so darn cute.

Oh, another strange family development. Our dog, Hummer, who is 5 yrs old suddenly started acting very sick this past Wednesday. Foaming at the mouth, staggering around the yard and looking at me with glazed eyes. It was really scary. After taking him to the vet for an exam the conclusion was that he had a seizure! Of all things. The vet told me it's not uncommon for healthy dogs his age to develop epilepsy. So, now we have another member of our family having seizures. Poor puppy. Good news is he's fine now.

January 17, 2007

January 17, 2007 at 03:19 PM CST

Wednesday…

“Be thou my vision,
O Lord of my heart;
Nought be all else to me
Save that Thou art

Thou my best thought
by day or by night,
Waking or sleeping
Thy presence my light”

This song has come to hold deeper meaning for us since the day we understood that Abby would be blind. Even more so as we listen to Ginny Owens sing it at the beginning of one of her albums… you see, Ginny Owens is also blind. “Be thou my vision, O Lord of my heart.” Blindness was and still is in many ways such unfamiliar and foreign territory for us. I remember crying together in the parking lot of the UT hospital after Abby’s 3rd eye surgery knowing that she would never see us smile at her, or blow her kisses. Abby’s future seemed hopeless and dark that day. It was only one of many such days for us. But our God who is rich in mercy has turned those tears into joy.

Yesterday we had our meeting with the Deafblind team from the University of Alabama Birmingham to discuss Abby’s future. These are five amazing women who have devoted their professional lives to helping children and their families who are deafblind. They have fallen in love with Abby and spent over 3 hours with us talking about her medical history, her family, her friends, her school and our hopes and dreams for her future. Combining their experience, training, knowledge and compassion they showered our family with encouragement and ideas to help Abby grow! They highlighted Abby’s strengths and were excited about her potential to learn ASL. Communication has been one of our biggest struggles. We’ve been working on ASL with Abby for a while now and these ladies were thrilled with her signing abilities. They told us that “Abby is a smart little girl.” They will never know how much that statement has lifted us up! Several of these women were very familiar with Dr. Christine Roman who we saw at Penn State Hospital back in Sept. for a vision eval. She is a specialist in cortical vision impairment and also practices as a developmentalist for NICU grads. What a gem she is! They were excited to read Dr. Roman’s recommendations and suggested using them along with Abby’s Future Plan that we developed together as a “team” to make her IEP (Individualized Education Plan) at school complete.

Abby’s IEP meeting is scheduled for Jan 25 at 8 am. All of Abby’s teachers, therapists and special ed coordinators will be present for our meeting. Two women from the Deafblind project will be attending with us to help facilitate and explain the very special needs of our child who is deaf and blind. Their presence in our lives makes us feel as though we have hit the jackpot! So many questions answered, so many fears minimized… Finally, help as arrived!
Nothing can compare to the feeling you get when the Lord lifts a heavy burden from your chest and you can finally breathe fresh, sweet air. That is the best way to describe the way we feel today.

Thank you for praying for success for Abby. Please continue praying for her school system that they would be receptive and open to learn more about Abby’s needs. That we will be able to explain things clearly and they would be willing to implement all of the suggested interventions with out reservations.

We love you all!

Ps. There is a very special “Abby Movie” that Aunt Christy made for me that we would like to share with anyone who wants to see it.

Go to:

http://picasaweb.google.com/myhullfamily
Click on Abby’s Movie and download to view

WARNING: Very Large File!! For those of you with slow connections this will be a bear. Come see it on our computer instead!

January 12, 2007

January 12, 2007 at 03:28 PM CST

Don't worry, Abby is ok!

Her brain is still holding up despite her broken shunt. Yea!

We're really updating the page for those of you who have asked to be kept up to speed on other aspects of Abby's life other than her immediate health. If you aren't one of these people, just click 'do not wish to receive email updates' when you sign into care pages. This way you won't get emails every time we update.

Abby is back in pre-K and attending 4 days a week now. This is an adjustment for me! I've actually been able to spend more than 10 minutes on a task with out being interrupted. I've been to Kroger twice this week with Josiah in the buggy (fun and easy!), and didn't come dragging home wondering what in the world I was thinking taking them both to the store! But all this said; I miss my girl.

Being at school 4 days instead of 2 will give her more opportunities to interact with her peers, for therapy sessions and for more consistency in her schedule. I can tell she is well stimulated b/c she comes home exhausted! She will also be starting feeding sessions at school soon. Hopefully practice makes perfect. She goes to feeding therapy at Huntsville Hospital every Monday which has been great. We finally have help with this after what seems like a long time of "winging it." Her therapist 'Melissa' consistently sees improvement with tongue movements and controlled swallows. I like to go just to hear "Abby is doing so good compared to some kids."

We have another IEP meeting with her teachers, principle and therapists on the 25th. To help us know how to advocate for her special needs we will also meet with Dr. Sanspree and the parent coordinator from AL Deafblind Project through UAB. They have met with us once before to discuss Abby's communication needs and our lack of knowledge about it! They are wonderful, caring, loving people who want to help maximize Abby's potential. We will be having what they call a "Future Planning" meeting to talk about Abby's past, her strengths, her weaknesses, her various needs and our goals for her future... short term and long term. Because they have extensive experience with Deafblind children their input is like Gold to us! They will help us tailor her education program to fit her needs like a glove. These people will also attend Abby's IEP meeting at school to help all of Abby's teachers and therapists understand how to work with a Deafblind child and how to encourage her to excel. Abby is the only Deafblind child in the school system right now.

The Future Planning meeting will take place at our house on Jan 16. Please pray for our family as we strive to help our little girl and learn about her world. We desperately want to be able to communicate with her better and understand her wants and fears.

We know God's plan for Abby is so much bigger than what we can grasp from where we stand. We are praying for a broader point of view... something close to what our Father sees. I'm sure that if He did let us look at the big picture we would be blown away and probably become wrought with fear and doubts. I guess it's best for our feeble brains if we just Trust Him and Obey.

Thanks for caring and for praying. We'll let you know how the meetings go.

TGIF!

December 19, 2006

December 19, 2006 at 07:12 PM CST

Tuesday evening…
Abby had her CT scan and doctor visit with her neurosurgeon today. He was running 2.5 hrs late so it ended up being a long morning! Her ventricles still look small, which is a big answer to prayer. Dr. Oakes doesn’t want to rush into surgery to fix her shunt unless she starts showing symptoms of problems. He told us that the shunt is either able to drain enough to keep her ventricles from filling up with excess fluid temporarily, or she doesn’t need it anymore. Because her hydrocephalus is due to inflammation from her brain bleed and not a congenital problem, there isn’t any way to predict what will happen. If five years pass and her ventricles remain small without a shunt revision than he said we could assume she no longer needs it! (That’s what we are praying for)

Dr. Oakes explained that there is risk associated with surgery but also risk with not repairing the shunt. He didn’t want to give percentages but made it clear that things could turn critical quickly. Unfortunately this news doesn’t bring significant comfort, although we are glad she isn’t having problems with her brain at this time. We will continue to watch her closely and return to Children’s in February for another CT and follow up visit. If everything still looks good we will do another CT four months from then. He said one positive thing is that the ER is open 24 hrs a day… in case we see any worrying signs. Great, thanks, now we feel better!

This could be the Lord displaying His healing hand in her life! Maybe Abby will remain stable and prove to all of us that she doesn’t need that old shunt anymore. Praise Him if that is true.

Please continue to pray that we will have wisdom to recognize any signs of problems. Abby belongs to the Lord; we’ve given her over to Him many times. It can be difficult to not worry about what could happen. I guess ‘trusting’ means we should let her sleep upstairs in her own bed again… (she’s been in our room since last week, so we can hear her better)

Thanks for all of your prayers, notes of encouragement and phone calls. We love you all!

Merry Christmas.

December 12, 2006

December 12, 2006 at 07:30 PM CST

Tuesday evening... We are home at last!
The past couple of days have been full of mixed messages and some confusion on our part. When you see 3 residents, 1 CRNP, 1 pediatrician, 1 chief of surgery with his side kick and 9 nurses who all tell you something different, things start seeming a little fuzzy. Some times you just have to nod your tired head and continue asking for what you think is best for your child.
Abby is doing much better than Friday and Saturday, but still not fully herself. She continued to run a fever through the night and was given Tylenol and Motrin together to bring it down each time. She rested much better than the night before. Today she has been ‘talking’ more, moving around and responding to tickles with a bigger smile. This morning we were told she would have to stay until she was free from fever for 24 hrs before we could go home… they did blood work (which we never found out the results) to look for the source. They also said they might have to tap the shunt to test her CSF (brain fluid) for infection. Then a few hours later the chief neurosurgeon came and said we could go home. Go figure. We are very thankful to be home!
Abby has not had a fever all day until we got home. At the moment it’s not high and she is sleeping peacefully. The plan is to return to Children’s next Tuesday for CT and to see Dr. Oaks. I think we will discuss possible surgery. Hopefully she will be completely well by then and we can make plans to get this over with! We are still praying that she won’t need the shunt, although we’ve been told that it is a very slim chance.
Thank you for all your prayers!! We really need wisdom to know when and if she starts showing signs that we should worry about. They told us to watch for subtle signs such as lethargy, sleepiness, ‘not acting herself,’ retching/vomiting and headache. Some of these she might normally exhibit after she has a seizure, so it’s difficult not to overreact. We are leaving it in His hands.

…”The mountains are His, the valleys are His, the stars are His handy work too. My God is so Big, so Strong and so Mighty there’s nothing our God can not do!”

December 11, 2006

December 11, 2006 at 04:38 PM CST

Monday morning 11:37. I'm finally getting a chance to update our Abby
page. I'll try to make the events of the past few days short.
Friday night, ER visit due to concerning symptoms
Saturday morning Abby had a strange looking seizure not looking like her
typical seizure. It lasted more than 30 minutes and we had to give her
Diastat, her emergency med. We met Dr. Mike at the ER where they ran
some tests and gave her some antibiotics. She had a fever of 104 Friday
night along with more seizures. Her fever was 104 Saturday morning also
which was probably the reason for the long seizure. Her wbc count was
higher than we hoped, so her neurosurgeon was consulted and we all
decided it would be better for her to be at Children's in Birmingham for
observation.
The neurosurgeon spoke with us in the ER and explained that he wanted to
observe Abby for a few days and watch her get better while being
monitored. He also said she would definately have to have the shunt
repaired soon. She was dehydrated so they have been giving her IV
fluids. He hoped we could do surgery today or tomorrow. Unfortunately
she isn't doing any better and is still funning a fever... this morning
it was 103.7. She feels terrible and is still very aggitated.
Now we are waiting for the pediatricians to come see her and try to
figure out if the fever is due to a virus or something else. We are
praying that her body will heal and her fever will go away so she can
have her shunt repaired and we can go home without worrying about
watching her for signs of brain problems.
We are blown away by all the wonderful support you have all given us.
Thank you to our special friends who drove down to spend the afternoon
with us...you'll never know how much that meant! Our Church family who
have made us feel so loved. Your prayers are so important to us and we
feel God's hand on our family.
"Our God is so BIG, so Strong and so Mighty there's nothing our God can
not do!" (one of my favorite child hood songs.. I still sing it. :)

December 08, 2006

December 08, 2006 at 09:28 PM CST

Thanks to those of you who prayed for Abby tonight during her ER visit. Bless those precious friends who came to sit with us! Seeing your faces made us feel like we are really part of a special family.
Abby started acting strange this afternoon when we got her up from her nap...she had vomited in bed and we hadn't heard her. She was lethargic, jittery, floppy and slightly ashen looking. After getting her out of the tub we were having a hard time keeping her awake. We called our neurosurgeon's office and they instructed us to take her to the ER. The CT and x-rays showed her brain was fine! Praise the Lord. They did some blood tests which came back normal. She had two short seizures after the CT. The neurosurgeon on-call at Children's advised them to discharge Abby and have us f/u with them on Tuesday. If we are concerned about any more symptoms we are supposed to take her directly to Birmingham. Well, we are home and thankful her brain is ok. She is vomiting more and has a fever of 102.8... so we think she probably has a virus. She had a stronger seizure a few minutes ago and now she's asleep again.
We love you all and appreciate your support. We'll let you know if anything changes.

December 08, 2006

December 08, 2006 at 01:58 PM CST

Friday - Well, so far so good. Abby has had some pretty good days. She was a little more fussy than usual yesterday, so I guess I started allowing myself to feel anxious. I've found myself looking at her with more intenseness these past few days, searching for anything that might mean she's getting sick. Then I remember she's in the Lord's mighty, capable hands. I can't do anything to change the situation except wait upon the Lord; and of course, trust. This is comforting. So are all the thoughtful notes you all have left for us and for Abby! I read them to her. The body of Christ is an amazing thing. Thank you.
A little side note... Andrew Peterson, Jill Phillips, Andy Gullahorn, Derek Webb, Sandra McCracken, Ben Shive. Wow! What an amazing performance we got to witness last night. A unique Christmas concert called "Behold the Lamb of God; the True Tall Tale of the coming of Christ." Andrew Peterson's version of the Christmas story starting in Exodus through the Old Testament and ending in 1 Peter! If you haven't heard it, you need to! Come to our house and you can watch the DVD with us. The most amazing song for me on this album: "Labor of Love." Talk about a real picture. Go to http://www.andrew-peterson.com/music. Scroll down to Behold the Lamb album. Click on 'open player' and listen to this song! It will bless your socks off.