Written Monday Night, November 27th 2006

I hope everyone had a good Thanksgiving. We sure did as we obviously have a lot to be thankful for. I am thankful first and foremost for Kelly. She is hands down the strongest, the most loving, compassionate, caring and beautiful person I know. Each day I thank God for her in my life. We are thankful for Abby, Emma and Maddy. They have taught us so much in this short time and we are thankful and proud that we are their parents. We are thankful for God and our faith that we will see Emma and Maddy again. And of course, we're thankful for our family and friends. You all have been so incredible during this and we appreciate everything.

Okay then...enough of the mushy stuff. On to the Abby Girl.

Abby has been doing well lately. Her feeding therapist has decided to let mommy feedAbby some rice cereal with a spoon and she did fantastic! Since the rice cereal is thicker than the milk, Abby has an easier time controlling it in her mouth. That doesn’t mean she doesn’t get some around her face though, as she isn't very used to the spoon and the whole opening her mouth thing. Take a look at these pics!





Abby is also doing well with her physical therapy. Below are some pics of Abby at her physical therapy appointment. Abby goes through a series of exercises with her therapist holding her on an exercise ball. The goal is to strengthen her muscles and coordination as she is forced into different positions. Another good exercise is tummy time, which is what she is doing in the other picture.







And finally, here is a shot of our little angel wrapped in her “Daddy’s little Girl” hooded towel from her bath.



We are very excited for Abby’s new feeding adventure. Our hope is that the thicker consistency with the rice cereal will really help Abby take some good steps forward with her feeding. Remember, the sooner she eats on her own, the sooner we can take her G Tube out. We don’t anticipate this to be anytime soon, but it’s still nice to see some steps in the right direction. By the way, her G tube and her shunt are still working well and don’t seem to cause Abby too much irritation at the moment.

Let’s pray that Abby’s feeding therapy continues to go well with the rice cereal, that her physical therapy continues to go well and that her g tube and shunt continue to function properly.

That is all for now friends. Thanks again for checking in. To all you silent ones, feel free to hop on and post some kind words as well. We truly enjoy all the comments.

The Gaya’s

A Good Week

Hello Abby Town,

I’m happy to report that we had a fairly uneventful week. Kelly met with the neurosurgeon on Wednesday who re confirmed that the shunt appeared to be working properly. Why it wasn’t or rather why it seemed not to be working before is anybody’s guess.
Abby had a pediatrician appointment this past week and she weighed in at 9 lbs 11 oz. Her feeding therapist said that while she may have taken a step back regarding the volume of milk she can drink, she is still progressing nicely overall regarding the quality of her sucking and swallowing. Abby’s developmental therapist is still very positive about Abby’s movements. So far everything looks great. The only bit of concern is her left arm but even that is looking a bit better.
We’re heading out to visit with Kelly’s Grandparents this holiday weekend in La Quinta. We can’t wait! I hope you all have a wonderful and safe Thanksgiving Weekend.

Enjoy the Pics. Take a look at what Abby found in the second one….her thumb!

Love,

Ryan, Kelly and Abby Lynn

A Busy Weekend

Well, it’s official. Abby is on lock down during RSV season, which stands for Respiratory Syncytial Virus. RSV season lasts until the end of March. Because Abby was on a respiratory ventilator she now has chronic lung disease and is very susceptible to RSV. If she did get it, it could turn into bronchitis and / or pneumonia and possibly kill her. Needless to say, we’re going to be extremely careful these next few months.



Thursday was Abby’s first RSV immunization shot. She’ll get one every month through March. She didn’t like it at all and spent most of Thursday sleeping. We thought she would be back to her normal happy self on Friday, but she was still very lethargic and sleepy. This is unusual for Abby. She usually takes 20 to 30 minute naps during the day but she never sleeps for an hour or two like she was on Friday. Abby was very fussy as well which is also unlike her. Kelly thought she might be getting sick so she checked her temperature but it was normal. Then Kelly checked Abby’s soft spot. It wasn’t soft at all. This was bad news because when Abby’s soft spot is full it might mean her shunt is not working. Since fussiness and sleepiness are also signs that the shunt might not be working, Kelly decided to call the hospital who transferred her to the on call neurosurgeon. She told us to bring Abby into the ER immediately, that it sounded like Abby’s shunt was indeed clogged and she would need to operate on her. This was terrible news! This meant brain surgery number 5 and her fourth shunt revision. We were told that while shunts in little ones like Abby do get clogged, Abby’s shunt seemed to get clogged more frequently than others. Great. Just what we need.



Anyway, Kelly brought Abby in and the neurosurgeon ran two tests to confirm the shunt was clogged. First, she stuck a needle in the shunt and then pulled back on it with a tiny syringe but no fluid came out. 99.9% of the time this means the shunt is clogged. At that point the doctor told us that it looked like Abby would be going into emergency surgery. She had the nurses start an IV line on Abby and call down to the OR to get everything ready. The second test was a CT scan to check the ventricles. If the shunt was clogged, the ventricles, which are the areas where the fluid accumulates would be more full than normal. But guess what? The ventricles WEREN’T overflowing with fluid as we had anticipated. Huh? So the shunt WAS working? Then why was the shunt tube empty? Why was Abby’s soft spot feeling full? Why was Abby so lethargic? We didn’t get any definitive answers. The neurosurgeon wasn’t convinced that Abby’s symptoms weren’t caused by something other than the shunt but she wasn’t convinced that they were. Either way, Abby WASN’T going into surgery! Yeah! But we couldn’t leave just yet. The neurosurgeon wanted to observe Abby for a while to make sure everything was alright. We spent the night at the hospital Friday night and stayed there all day on Saturday. Abby tolerated her feedings all night and all day and her soft spot started feeling a bit more soft as well. At around 4:00PM on Saturday we were discharged.

And there you have it. Ever since we got her home on Saturday Abby has been doing pretty good. She is still sleeping more than usual but when she is awake she is back to the happy little Abby we’re used to. So the doctor told us to stay on high alert and call immediately with any changes. We see the neurosurgeon early this week for a follow up visit and will keep you posted. But for now, we’re happy to be home.

Please pray that Abby’s shunt will continue to work well and that she will stay strong.

We love you all.

WRITTEN MONDAY NIGHT NOV 6TH 2006

Okay, we’re back. My apologies for taking so long again, but this time I have a good excuse. Seriously! Kelly and I had the opportunity to head out to La Quinta with Abby to attend the wedding of some our close friends this past weekend Abby didn’t attend of course, but luckily for us La Quinta is also where Abby’s Great Grandma and Great Grandpa live who were more than happy to watch her for the evening. I’m happy to report that Abby did very well with them. To our newly married friends Rolf and Dana, congratulations you two. Thanks for giving us an excuse to get away for a bit. Even though we packed enough stuff to be gone for years, it was worth it. I’m sure as parents we’ll get better at the packing thing. Please say we will. This past weekend was ridiculous. You would have thought we were moving across the country. No joke.

Anywho, on to the update…

Abby had another eye appointment with her new Pediatric Optomologist last week. He concluded that her eyes looked good for now. He does want to see her again in 6 months though since she had such extensive laser surgery to stop the ROP (Retinopathy of Prematurity) from spreading. Feel free to google ROP for more details.
Abby’s physical therapist has recommended that Abby has another day of therapy called occupational therapy each week, which involves the development of her fine motor skills such as reaching, holding onto objects etc. Her left arm is still pretty limp and doesn’t do much and this therapy will help with that. By the way, I don’t think I’ve mentioned just how much we LOVE Abby’s therapists. There are 3 total. Her feeding therapist and occupational therapist are twin sisters. We met them while still in the NICU and they’ve been part of the journey ever since. Abby’s physical therapist came highly recommended by those two while Abby was in the NICU as well. Of course Kelly and Abby fell in love with all of them instantly. Thank you ladies for all that you do for our little nugget, or better known with you guys as “ our burnin’ hunk of love.”
Abby is still having trouble taking a bottle. A full feed is now up to 90 cc’s. Today she took 70 cc’s which is great, but did horrible every other time. Oh well. Our goal right now is to simply give Abby the opportunity to try and when she gets frustrated or tired, we’re done. The last thing we want to do is force her to eat because she’ll get oral aversion, which means she won’t allow anything in her mouth. That is a much more difficult problem to tackle according to Abby’s feeding therapist, which is why we’re so careful not to push anything. So when Abby says she’s done, we listen. Already bossin’ us around! Nice huh? And like I mentioned in a previous entry, Abby is happy these days so this whole eating thing doesn’t bother us quite as much as it did, simply because it clearly isn’t bothering her. Keep Abby in your prayers for success in these therapy sessions with her feeding and her motor skills.
We haven’t done much in the way of pics this past week but I do think some pretty darn cute ones will be coming up shortly.

Have a fantastic week everyone.

Ryan and Kelly.