SOOOOOOO Long ago!!!!!!

I am sorry it has been so long since any info. Abbie is doing great. I just wanted to say hi and let you know that I am planning on posting at least once a month this year and this is January's.



We have been given the OK to stay away from Cardiology for a whole year! As nervouse as this first made me I am totaly cool with one less Dr. apt. so often. He is so pleased with Abbie's heart function.

Abbie started school last March. I was pretty happy with things except equipment. Her PT was wonderful and tryed to get something that would be small enough for Abbie. This summer they finaly agreed to let the PT order a chair just for Abbie! It is a good chair for her but I feel like I am taking Abbie to school to be babysat. I love her teacher and the PT but she was progressing in all areas so much better when she was getting outside medicaly baised therapies. I am sure I will get alot of negative thoughts on this but, Lee and I have decided to pull her from preschool and put her back in the other therapies. I will still take her to the elementary school to get educationaly baised therapies but, we feel she needs more and there is not enough time to add babysitting (preschool) in too. I will post again soon and let you know how things are moving with this.

Look back for pictures soon!

An Update

Abbie has been doing well. She will be three on Monday March 16 and I will post a big update then. For now a few things.
The neurologist is pleased with her. We will be doing another EEG soon because it has been a year since the last one but he does not think it will show anything different. This is great! He will be another yearly Doctor.
The Endocrinologist was great. I was worried they were going to want to put her on growth hormone right away. He actualy feels like it is not a hormone issue. He said if he lined up 1,000 girls Abbie's age she "might" have 1 or 2 shorter then her. If we lined up 1,000 girls Abbie's age no one would weigh less then her. And if we lined up 1,000 girls Abbie's length no one would weigh less then her. Because her weight is so much more greatly affected then her length he does not feel like it will be an Endocrin thing. He wants her to go to the Gastroenterologist. This will probably be a few months away because of all of the paper work and scheduling. We did do blood work. This is always a fight with Abbie. She does not like to give us her blood. We had to stick her three times and they were not sure if they got enough. They called this week to let me know it was not enough and we have to go get it done again. What joy =( I'll let you know what comes of it.
We have also done all of the testing for school. The IEP meeting is scheduled for her birthday, Monday, March 16. I am alittle worried because the school she will have to go to does not have equipment small enough for her and she will need to start the next day to keep up with therapy. They will not even dicuss equipment until the meeting so I may not be sending her for anything but the 30 min of therapy for each therapist until the equipment is available. Pray this all works out please.
Look for the new update next week after Abbie is the BIG 3!!!!!

Updates on Peter!!!

Peter, my friends baby, is doing fantastic. They did not expect him to make it after all of the complications he had. He is now on the schedule to be moved to the regular floor today and possibly go home by the end of the wekk! Praise God for his goodness. Thank you to all who have been praying and please continue to pray for a full recovery.

Please Pray For Peter!

This is Peter Ellsworth. He is a friends baby. He is 2 months old and needs your prayer. He had heart surgery yesterday Feb. 24th to conect his pulmonary artery to his lung. He came through surgery fine but last night at around 3:00 am his heart stopped. They had to resuscitate him and could not get his heart to work on it's own. They put him on the heart/lung machine. The Dr. is not giving any outcome. He could come through, come through with brain damage, or not make it through. The chance is the same for all situations right now. He has a caringbridge site if you would like to stay updated with what is going on with him. www.caringbridge.org/visit/peterellsworth I ask for your prayers for this family and little Peter.

Orthopedic Appointment and New DYNA SPLINTS

Abbie does not mind the splints, as you can tell by the big smile!

She looks like she is thinking pretty hard. I'm not sure if she is wondering about the splints or if she is trying to figure out how to not fall over!

Abbie had an appointment with ortho at the end of January. He is pleased with her bones and joints. Nothing new has changed. There are 2 things that have always been a concern and are on going.

The first is her thumb joints. She does not extend her thumbs out completely and this could cause contractures in the joint. We ordered a pair of braces for her hand long ago and she has worn them quit a bit. Now, they want them on her 2 hrs off 30 min all day long. There are so many other things to work on in OT that the thumbs are not priority all of the time. This will keep them stretched almost constantly. She does not mind them but the velcro closures scratch her face so we put socks over them. I will try to get a picture so you can see how they look.

The second thing is the back of Abbie's knees have never stretched out straight. We have worked on this from the begining. They started out at about 30 % and we have gotten them to around 10-15%. We feel as if they now need a constant stretch to get them the rest of the way stretched. Ortho ordered the DYNA SPLINT. We just got them on Thursday. I can not believe how big they are! Abbie does not seem to mind them. She started out with 1 hr a day and will build up to 5 hrs a day. We are hoping this does the trick!

We have also stared to see a behavioral Anylist. I will tell you all about this new appointment when we get all of the plann of action sorted out. I am very excited for this new adventure. I think it is going to be a great help for Abbie and me!

We have 2 other new appointments to add to our list of Dr.'s. This month we will see a neurologist and an endocrinologist for the first time. I will keep you posted on how these appointments go.

2009 MRI Results Are In

ABBIE WAITED PATIENTLY FOR THE NURSE TO TAKE US BACK TO START THE MRI.



Abbie has 2 small canals in her spine that we recheck every year for any changes. These have been there since birth. They are explained as little open areas next to the spinal cord with spinal fluid in them. If they grow and continue to fill with fluid they would begin to compress on her spine and nerves and cause lower extemity paralysis. Last year there was no change. This year we did the MRI on Jan. 2. Abbie did very well without being able to eat. It took about 1 1/2 hrs once they began. They took me back with her to get her to sleep before they started the IV. She went to sleep with a fight to the very end. Then I had to leave for the MRI itself. They told me it would be about 45 min. I started to get a little nervous when it took so much longer. Finaly, they came to get us to see her in recovery. She did great under the anesthesia. The reason it took so long was Abbie is a very hard stick. It took 7 times of not getting a vein before they called in a 2nd Anesthsiologist in to help with a jugular vein IV. This was kind scarry to me but they said the bleeding stopped fairly quick. Yuck!!! Any way, the Dr. called me with the results saying one of the canals looks to be getting smaller and the other is still the same. Good news! It looks as if this is going to resolve itself with no surgery! We will check again next year.

Just some Picture updates!

Every Christmas Eve my children open one gift and it is always their Christmas P.J.'s! I try to get a great picture of them in front of the tree but with 5 it never works out so this is the best one from this year.

This is in VA at my mom's house at thanksgiving. The kids hate that I love pictures!

Abbie had a blast in the Fall leaves in my mom's front yard! Kaylee actualy had to put her arm under her head because she kept disappearing!

The kids don't get leaves here so they all enjoyed it. We also got their help in raking, and bagging leaves! They just thaught it was playing!!!

Abbie slept great when we went to DC. She was covered and bundled so well she could not even move. I guess she figured she mine as well sleep!!!!

We had a wonderful Holiday season. We hope you all did as well. I will post an update soon!

A New Food Group

This is the spoon Abbie ate over Thanksgiving break!!!!


We went to VA to visit my mom for Thanksgiving. We had a great time. The wole family got to go this time. EVEN LEE! On Tuesday we decided to go to Washington DC. We wanted to get there and eat breakfast but Lee had to have Starbucks on the way. Abbie was awake so we got her an oatmeal. I was driving and Lee sat in the back to feed Abbie her oatmeal. He comented on how he could not believe she had not broken the plastic spoon she was biting so hard on it. The next bite we heard a crack and when the spoon came out there was a good size piece missing. We were also to late to get it. I guess the oatmeal made it slimmy and it slid right down her throat! She did not have any problems but I was worried about it cutting her insides. We were about 10 min from the hospital my mom works at so there we went! The staff was great. They said it would not show up on xray but if she could eat and drink OK then it made it to her stomach. She ate the rest of the oatmeal in the ER (with a metal spoon ofcourse) and did fine. So, being me, I dug through poop for the next few days looking for a spoon!!! I never saw the actual piece but there was a wierd diaper with black stuff. They said that was probably it because her stomach acid is stong enough to begin to digest it. Who knew! We have decided to give her 1 piece of plastic spoon a week because she was able to poop beter that week then any other time. (just kidding ofcourse)!
The cool thing is while we were there the nurse informed us that she was sure there was another family with a child with Abbie's same diagnosis that came there and lived in the Richmond area. I gave her my contact info to give to the family and with in 3 days she contacted me. She is a very sweet lady that has not been in contact with other 1p36 families. We talked on the phone for a while and I am hoping she joins our support group online! Hey, all things happen for a reason ha?!!!!

Heaven's Special Child

A meeting was held quite far from earth, It's time again for another birth. Said the angels to the lord above, this special child will need much love. Her progress may seem very slow accomplishments she may not show, and she'll require extra care from the folks she meets way down there. So lets be careful where she's sent, we want her life to be content. Please, Lord, find parents who will do a special job for you. They will not realize right away, the leading roll they're asked to play. But with this child sent from above, comes stronger faith and richer love. And soon they'll know the privilege given in caring for this gift from heaven. The precious charge so meek and mild is heavens very special child.

(This is coppied from a friends blog but I thought it was so sweet)

Halloween

Abbie was the "SWEETEST" tootsie roll you have ever seen! She did not mind the costume at all. I figured she would hate it but she acted like she didn't even have it on!

This is a cousin picture. We went trick or treating with my sister and her family. The cow, skeleton and pink fairy are my nefews and niece.

Halloween was fun! There were 11 kids to chase so we were pretty busy. It did rain but the kids did not seem to mind so we stayed out.

The Chesterfield Berry Farm in VA 10/2008

We tryed to get her to sit up behind the pumpkin but she kept pushing back. She was also not sure about this big orange thing either!

Abbie is just about perfect size for the tricycle but obviously not strong enough yet. She did enjoy my mom helping her sit on it and knew to grab the handles which was kinda cool!

She loved trying to eat the hay! I think she also liked the way it felt. She grinned alot while she was playing in it!

Abbie loved the corn bath at the farm. She loves to put everything in her mouth so I was digging corn out every other second. She had a good time in it and it is good sensory therapy for her too.

This year they let her ride the Barrel Train in Kaylee's lap. She reached for the wheel right away and started to steer! She actualy rode this 2 times and liked it alot.

The Chesterfield Berry Farm is in Chesterfield, VA. My mom lives there and we went to this farm last year for the first time. It was so fun that we decided to take the kids again. The older 2 boys and Lee had a football game so I took off to VA with Abbie, Kole and Kaylee. Last year Abbie was not able to do anything. This year was different and She really enjoyed herself!

Strength and New Accomplishments

Abbie is still doing great in her stander. I wanted to post a few pics of her in it so you could see all of it's angels to get a better idea of how it works.

She will last longer everytime we put her in it and it really seems to be giving her strength and stretching her legs out.

She stays in it for at least 10 minutes evey day but if she is getting entertainment from her siblings she does not mind staying in a little longer!

The braces you see on her ankles and a ways up her claves are called DAFO's. I don't know what that stands for but they support her ankles from rolling and make it a little easier to stand.

Abbie is gaining stength very steady. I have had quite a few people comment on how strong she is getting lately! She has finaly figured out how to roll from front to back! This does make tummy time a bit hard since she no longer stays on it long. It has however made her more tolerable towards being put on her tummy. I think it is because she no longer feels traped. If she wants off of it now she just rolls over. It is fun to see her do it! I do not think it will be too long and she will be rolling both ways and we will be looking for her under things!!!! She is also sitting on my hip with me just holding her with one hand for support as I walk! This is such a great relief to me. I know people think I am crazy but after 2 1/2 years it is so nice to have a free hand to use! Her head control is there and her back muscles are comming along just fine.

As I mentioned, Abbie will stay in her stander for longer periods of time if her siblings are entertaining her. They have decided that they can push her through the hall running pretty fast and she loves it! I think she feels somewhat like she is independently mobile. They will also do this when she is in her highchair as it is on wheels as well! She will "play" with them for a very long time doing this! I love to see them interacting this way. I also think Abbie knows that she is actually "playing" with them!

I have many more pics to post and things to "write" about but for now I will end. Stay tuned for some cute halloween pics!

The Loss of Little Ones

I am asking that you pray for our 1p36 families all of the time. Very specifically, 3 right now. There have been three 1p36 families that have losted there little ones in the last 6 months. Jenny (19) in April, Annette (6) in Sept. and Little Chloe (1 yr 14 days) on October 21. We have been blessed through all of Abbies trials to still have her with us. For that we are greatful but, we are not promissed tomorrow. None of us are. Please don't take any moments for granted. I know these families covet your prayers. Even though we are separated by so many miles we feel closer to these families then some of our neighbors because they understand. I would like to ask that each family be remebered in your prayers. Thank you so much for your support.

FROM 30 MIN.OLD TO THE FIRST HEART SUGERY

THE FIRST TIME I GOT TO HOLD ABBIE SHE WAS RIGHT AT 24 HRS. OLD. SHE WAS SO TINY AND I DID NOT WANT TO EVER LET GO OF HER!

WATHING LEE HOLD ABBIE WAS SO AWSOME. SHE DID LOOK SO MUCH SMALLER IN HIS ARMS.

KAYLEE GOT TO GO IN THE NICU TO SEE ABBIE THE DAY AFTER SHE WAS BORN. SHE LOVED VISITING HER. THE NURSES EVEN LET HER TAKE ABBIE'S TEMP!!!

TY ALSO GOT TO VIST ABBIE IN THE NICU THE DAY AFTER SHE WAS BORN. HE WAS ALITTLE MORE NERVOUS BUT HE STILL WANTED TO GO VISIT EVERY 7 DAYS. THAT IS ALL THEY WOULD LET CHILDREN UNDER 15 GO IN.

ABBIE WAS HOOKED UP TO SO MANY WIRES IT WAS UNREAL. THE MAIN THING SHE DID WAS BREATH ON HER OWN. THIS WAS SUCH A BLESSING!

Abbie was taken to the NICU about 30 min. after birth. Lee followed her and got to talk to the Doctors first. He came back to my room about an hour after they took her and let me know she was breathing on her own and looked OK for now. They told me as soon as I could go pee I could go down to see her. You better believe I was in that bathroom right away and headed down to the NICU. She was so helpless! I could not even hold her for the first 24 hrs.

They sent her blood work off to the lab right away but, said it would be 12 to 14 days before we had the results. We had to saver each moment because we did not know if we would have another. This is something I have not taken for granted with any of my children since abbie's birth. There is no garantee we or any one we love have another moment of life at any time.

The cadiologist visited a few times in the first few days. They decided that Abbie would need heart surgery right away if she were going to make it. She had something called Aortic coartation. This meant that her blood flow to her lungs and body was closed off. Every one is born with a hole in their that closes in about 48 hrs. Abbie's never closed because GOD knows what he is doing! If her's had closed on its own Abbie would have died in less than 12 hrs. The surgery they would do would close the hole and open the arch. They wanted us to think about this because if she had trisomy 18 then she would not live even if they did the surgery. We did not care what the blood work was going to say we wanted Abbie to have every fighting chance possible.

So, at eight days old, 3 lbs. 14 ozs. we went to the OR. This was one of the scariest days of my life. Talk about sress! They took us up to the PICU waiting room because all babies from the NICU go to PICU after heart surgery for the cardiologist to be watching over them. Then when the cardiologist is happy they send them back to the NICU for the neonatologist to be in charge until they go home. They were thinking that Abbie would be in the PICU for around 4 days before they sent her back to the NICU. They told us a nurse would keep us updated through out the surgery. The nurse was good. She came in and let us know that things were going well a couple of different times. The Dr., who is the most awsome cardiothurasic surgeon in the world, finaly came in the waiting room to tell us our baby girl was almost ready to see us. He said she did great!.............

LOTS OF NEWS

ABBIE PLAYING ON THE FLOOR. SHE LIKES TO PLAY ON THE FLOOR AND ROLL FROM SIDE TO SIDE. SHE HAS EVEN FIGURED OUT HOW TO GET OFF OF THE BLANKET AND IN ALL DIFFERENT DIRECTIONS!


Abbie has seen some Dr. this past week. All good reports. Praise God! We will be adding a new Dr. to the agenda soon.

We went to the Pediatrition on Monday. It was a 6 month catch up with Abbie check! We have been "talking" on line at our support group about something called Tethered Cord. This deals with the spinal cord being attached to tissue in the back at the tail bone. I was a little worried because Abbie does have a few of the symptoms. Abbie had an MRI done last year that I was hopping would tell us if she did have a tethered cord that was looked over so this is one of the reasons we went. The Dr. looked at the results and it actualy says, "no tethered cord". This is great. It is one more thing we have rulled out and don't have to deal with! We also wanted to get things stared to see Endocrinology (sp). We just want to rule out any underlying issue that may be causing Abbie to not grow very quickly. None of her Dr.'s think there is but we want to make sure. So, this will be our added Dr. Fun, Fun......... I don't have an apt. yet because they want to review her records to make sure they put her with the best Dr. for her. I will update on it when I know more. We are also in the process of getting a disabled parking permit for Abbie. This will be so nice to not have to lug her and the others too far to get in a store! It will also come in handy when her new wheel chair arives!!! More on that in a bit. Abbie was 14 lbs. 13 1/2 ozs. She was 32 inches long. My word can we get any longer for our weight?! She is still growing ever so slowly!

Abbie saw the ENT on Tuesday. He is pleased. We will always have issues with her ears getting clogged because of the form in her canal but the oil drops are helping. There was no fluid and the 2nd set of tubes is still in place. He is great and thinks about Abbie's whole person. He may come in with some great help once Abbie starts in the school system and even before. We are going to try to get insurance to pay for more and I may have some great help wth this. I'm not sure I can post toom uch on it. Just be in prayer for the insurance sittuation.

Abbie will be getting a new wheel chair!!! The loner that was given to us is not working out like we had hoped. Abbie is to rotten and has figured out how to get out. She scoots her butt and arches her back and gets over the edge hanging by the seat belt. Not too safe. She is a mess. We decided She needed a costome one specificaly for her. We will be thinking of it all to keep her in place (I hope). When I get the link to it I will post it so you can check it out. It will be at least 3 months before we have it but the process has started anyway. I am very excited.

Therapy is going well. She is gaining strength and more control each week. We are making her a cool chair out of foam. I will post pictures of it hopefully next week. She will sit in it with her legs straight out infront of her and have support behind her for her trunck. I think it is going to be very helpful in trunk strengthening. She has also stared to roll off of her tummy onto her back. Sometimes she needs a little help tucking her arms under her but she is doing great with it.

Annual Eye Check

ABBIE SITTING IN HER BUMBO CHAIR WORKING WITH MS. LISA, HER EI THERAPIST. THIS IS THE CLOSEST TO HER EYES I HAVE.



Abbie had her annual opthomology appointment yesterday. This is the 2nd time we have seen the eye Dr. We were pleased last year to know that she had wonderful vision and the eye structure was perfect. 1p36 Deletion Syndrome affects the eyes in many of the kids. The Dr. told us things looked great and we did not have to come back for 1 year. So, this was yesterday. I have never seen any issues that would lead me to believe that Abbie could not see well but, you never know since she can not tell us. When the Dr. came in she remembered Abbie right away. I really like this Dr. alot! She did some tracking things and made some observations and said that she thought Abbie saw great but, she wanted to do a full exaime just to be sure. The nurse dialates her eyes and then the Dr. comes back. She checked Abbie's vision and optic nerve. She was very pleased. She feels like Abbie was blessed to not have any affect of the Syndrome dealing with her eyes. If anything would be from the Syndrome we would already see it. I was very glad to hear this. Abbie does have asigmatism (sp) but, she said it is common for a 2 year old so she is not to worried. If it does cause problems in the future it is from our family history and we will deal with it then. This is wonderful news. Abbie is so comunitive through her eyes. She also learns so much by watching things so we are very blessed to have great vision. By the way, Abbie got her green eye's from her Nana (my mom). Go figure. She is the only other one in the family that got them. We think it is cool!

In the Begining

Abbie was not born yet when the first sign of something being not quite right appeared. When I was 17 weeks pregnant we went in for our ultrasound to find out what we were having and do all of the measurements. I knew something was going on when the lady kept measuring the same thing over. She told us we would have to see a specialist because she could not get all of the info she needed. I knew something was wrong. Luckily, my Dr. found me before I left the office and told me that the baby had inlarged latteral ventricals in her brain and Choriod plexus cysts. She said it might be something but usauly it is not. I went to the specialist 6 days later and they said the same thing except they told me that 90% of the babies with these cysts were fine and 10% were linked to a chromosomal abnormality called Trisomy 18. They wanted us to have an amnio to make sure she would be OK. We did not because it would never have changed the outcome of this pregnancy. At 24 weeks they found the first hole in her heart. This was our second red flag for Trisomy 18. Again they wanted us to have the amnio and we declined. We started to see a pediatric cariologist at this time. At 28 weeks she hit IUGR which stands for Inter Uterine Growth Restriction. This means that she was less than 10% of the size she should have been at that gestational age. This was our third red flag for Trisomy 18. At this point they told us Abbie would probably not live ful term. If she did she would probably not make it through labor and delivery. And if she did she would be here on earth for about 5 days. Wow, how do you deal with that? Lots of prayer and talking, Family and Friend support. Still does not make it easy! At 38 weeks and 5 days Abbie Grace was born weighing in at 4 lbs. 2 oz. 16 3/4 inches long. She was blue and not breathing. The NICU team worked on her for a while, to me what seemed like forever. They had to bag her to get her breathing. Finaly, we heard the small but definate cry. She was so tiny and sick. We did get to hold her for about 30 min before they rushed her away to the NICU. More to come on the first part of Abbie's jouney......

Details to Come

ABBIE ON THE BEACH IN HOLLYWOOD, FL LOVING THE SUN! SHE LIKES TO WEAR MY SUNGLASSES. AUG. 2008

ABBIE STANDING FOR THE FIRST TIME. SHE LOVED IT AND HER MOMMY AND PT ARE VERY PROUD OF HER! JUNE 2008

ABBIE SMILING BECAUSE HER AUNT BRENDA FED HER CAKE THE WHOLE TIME WE WERE IN OK THIS SUMMER. JUNE 2008

Abbie is our 2 1/2 year old daughter with 1p36 Deletion Syndrome. She was diagnosed at 8 days old with this chromosomal abnormality. I will post the last 2 1/2 years in time and explain what her diagnosis actually is. But, for now, she is doing great. She is up to 14 lbs. 9 oz. and 31 1/2 inches tall. She gets stronger and stronger every week and that is what we want. She improves in one or more areas each therapy which is such a blessing! At this time Abbie has 1 hr of each of her therapies each week, Physical therapy, Speach therapy, and Occupational therapy. She also receives 2 hrs of cognative and developmental play each week. Yes, we are busy but it is worth every min. of our time. Please keep checking in on Miss Abbie. Updates and passed history to come!