HAPPY HALLOWEEN!

HAPPY 6 MONTH BIRTHDAY ABBY!!!

Written Sunday night October 29th, 2006




Get this; on Friday, Kelly had her usual appointment with Abby’s developmental therapist who could not believe how well Abby was doing. She was holding her head up well, her left arm was looking better and she was kicking like crazy. She said that she’s not going to limit what we encourage Abby to do. In other words, there are no significant signs pointing to Abby having any serious disabilities at the moment so we’re going to challenge her on all fronts regarding her motor skills. How great is that?!
Remember though, she’s not out of the woods on this one and some developmental hurdles can manifest themselves later, but for now lil Abby is doing great and we’ll take it… thank you very much!
This morning I gave Abby a bath and it was so much fun. I usually assist Kelly but this time I was in the drivers seat and I had a blast. Abby loves bath time. She likes the warm water and she loves it when we lay a warm wet washcloth over her like a blanket. Her favorite, as I am sure it is for many little ones, is the water being poured over her head and going down her back.
After bath time it was time for cute outfit number 1 billion and 3, however this time, we spiced it with something new….shoes! Take a look at the picture of me and Abby for a shot of her in her first pair of kicks. Pink…of course. Mommy wouldn’t have it any other way.

As far as her eating is going, I have to report that it’s not doing so hot. She’s growing a lot faster now, which is good, but Abby’s therapists have said that this growth spurt could be why she’s taken a step backward in her eating. Her muscles, including the ones she uses to suck, swallow and breathe are growing very quickly and she has to learn how to use them again. But you know what? We’re not so caught up on this anymore. I used to really hang on to her feeding and hope each day that she would turn the corner here. Now though, it doesn’t bother me because she’s a happy baby. As long as she’s smiling and playing and continuing to grow and get strong, I’m okay with the eating challenges. I think it really bothered me before because Abby was in so much pain and it was really hard to watch her struggle over eating too. If you remember, her shunt got clogged again and she needed surgery, her constipation was really bad and irritating her, and her G Tube was getting infecting and causing a lot of pain. Abby was always crying and fussy. It was awful and for some reason I figured her learning how to eat would fix everything. Anyway, enough of that. Like I just said, Abby is a happy baby these days. It seems she really did turn a corner (knock on wood.)

Stay tuned for Halloween pictures of Abby on the 31st!

Enjoy the new photos of our little nugget.

WE LOVE YOU ALL!

SERIOUSLY!!!!!

So today was a rough one at work. But then I got home and look what I found?




Heaven on Earth!

The Latest On Abby

Written Monday Night, October 23rd, 2006

Well, the MRI we had last week went well. The area that controls the left side of Abby’s body was fine. She still favors her right side, but Abby’s developmental therapist said to hold off on doing anything for right now. She is after all, still moving her left arm, just not nearly as much. Personally, I’m a bit concerned about the whole thing, but I am confident with some therapy to encourage Abby to use her left arm, she will overcome any problems that may arise in the future.
Abby was eating very well at the beginning of last week and is getting very close to taking a full bottle. A full bottle is still 75 cc’s and Abby got up to around 70 cc's a few times last week. It usually takes Abby about an hour to finish. Some days she’s really calm and has her suck, swallow breathe coordination under control and other days it’s a real battle. She cries and grunts and squirms and throws her arms about. When that happens we just throw in the towel and finishing feeding her through her g tube. In fact the past few days this is exactly what was happening. We’re not sure why this happens either. It could be a number of reasons. This morning though she took 55 cc’s for me and 60 cc’s for Kelly this afternoon. That’s still not a full 75 cc’s I realize, but it’s a big improvement from the past few days. A couple steps forward then a couple steps backward I guess.
Abby’s developmental therapist said that she is very happy about how Abby is moving overall. She likes how her legs are kicking and she likes how strong her neck is getting. She bobbles her head all around when we hold her now as she tries to hold it up. It’s adorable. And she’s really starting to smile and coo. I can tell that she wants to laugh at the funny noises and faces I make at her, but for now she just flashes the cutest smile I’ve ever seen. I’m sure the giggles will come later.

And that’s about it for now folks. Oh….Abby is 8 lbs 8 oz! That’s a long way from 1 lb 10 oz huh? She’ll be 6 months old on the 29th. Crazy huh?

Please say some prayers for Abby’s eating. That’s the biggest topic of concern at the moment. Remember, the sooner she can eat 100% on her own, the sooner we can get that that G Tube out of her.

Have a good week everybody. We love you. Enjoy the latest pics!

Site back up and running normally

Just a note to let everyone know that the site is back in full working order after a minor technical fix was required this past week.

Written Sunday Night October 15th, 2006

Dare I apologize for taking so long again? Do I even attempt to say, "I’ll be more frequent with my updates?" Nah. We all know that’s a bunch of hot air anyway! I’m thinking once a week or so is about the norm these days. The way I see it, if I write every other day it will just be boring. Think of it as a good thing. Abby is doing better so there isn’t as much to report. Trust me though, if something happens that requires an update and an emergency request for prayers, I’ll get on it. I say this only because some have mentioned that they’ve gotten concerned after a few days of no updates for fear that my silence is due to something bad with Abby. I promise this will never be the case. I always have my blackberry with me and if need be, I’ll do an update that way. So there you have it. My official declaration that we’re scaling back to a once a week update.

This week Abby has continued to turn that corner. She is still eating well for the most part. She’s taking in anywhere from 50 to 60 cc’s each time. Her full feed is still 70 cc’s and she hasn’t gotten to that yet, but like I said last time, the quality of her suck, swallow, breathe coordination is so much better these days. Abby is also very content when she’s awake. Just this morning Abby and I woke up together and she smiled and played for about 2 hours. I was in heaven. It’s such a blessing and an answer to our prayers to watch Abby enjoy herself and not be in any pain.

Our main concern right now is the left side of Abby’s body. Ever since her surgery we have noticed that her left arm has been more quiet than normal. While her right arm springs about, her left arm will sit there motionless. It’s not that she can’t move it though. For example if I hold it up and move it around and then let go she’ll continue to move it herself. Or if I hold her in the crook of my left arm so her right arm is pressed against my body and the only usable arm is her left, she’ll use it then too. But if she’s just lying down and kicking and moving like babies do, her left arm just sits there. I watched all day today and it has actually been a bit better but it was enough of a concern last week for Kelly to make an unannounced visit to Abby’s neurosurgeons office. By the way, catching our neurosurgeon without an appointment can be really difficult depending on his surgery schedule and what not. However Kelly got right in to see him, which was very lucky. He didn’t seem to be too freaked out, but he didn’t want to take any chances so he ordered an MRI. We’re not sure when that will be but we’re thinking sometime this week.

Last weekend I was talking to a friend of mine who said, " I call Abby Abbycadabra, because she’s magic." I thought that was great and I have to say, I agree. She IS magic. She is constantly amazing us. I’m sure she will continue to do so as the she answers the big questions in the future. How well will she walk and talk etc…? I’m looking forward to all of it.
Thank you all for checking in. There are quite a few of you from out of state, most of whom Kelly and I haven’t even met. I am truly honored and blessed to have you all praying and caring for my baby girls well being.

Have a fantastic week friends.

PS - Kelly has a busy week this week so please keep her in your prayers as well as Abby. A pediatrician appointment, a neuro appointment, 3 feeding appointments and a physical therapy appointment. She gets weighed this week too! She's in the 8 lb range and hopefully pushing 9 lbs. Stay tuned

Written October 9th, 2006
Kelly and I have often asked when our Abby will catch a break. If it’s not one thing it’s another. So far Abby has been mostly uncomfortable with some short moments of calm and comfort. When will it be the other way around? When will Abby be comfortable most of the time with the occasional moments of fussiness?
Well, we’re hoping that time has come! Abby is doing a lot better these days. She seems to be getting used to her G Tube and she is eating a lot better as well. A full bottle is 70 cc’s. She averages about 40 cc’s every time we feed her from the bottle and she occasionally takes around 50 to 55 cc’s. We’re still not at a "full bottle" yet, but this is a lot better than a week ago. Last week she wouldn’t take the bottle at all.
People have asked for a picture of the G Tube so here it is. What she has now is actually called a Mickey Button. The tube you see actually comes off of that the other part when we’re not using it. It’s nice because Abby doesn’t have a tube hanging off of her all the time. An issue of concern right now is Abby’s ability to go poop. We’ve tried to help her out in this area with milk of magnesia as well as with some suppositories but to no avail. It’s important her little system learns how to move things along on its own. We don’t want Abby to get too dependent on our assistance.

Abby is smiling a little bit more and more each day. It’s a lot of fun to watch. Okay, sometimes it’s because she’s tired or she’s got some gas, but that’s alright. She is still as cute as can be. She is even cooing a bit. Sometimes she surprises herself with the sounds she makes. We’re hoping that this is a true corner that Abby is turning and not just a good few days. This week is filled with many more doctors appointments for Abby and mommy. Keep the prayers coming that this is indeed a new chapter for Abby and that she will begin to take at least one "full bottle" each day. That’s the goal for now. One full bottle a day.

Have a wonderful day everybody.
PS – Sorry to be such a slacker….again.

Hey everybody,

I don’t have much time but I know everyone is concerned about lil’ Abby Girl so here we go.

Abby is doing much better these past 2 days. She responded very well to some treatment with her feeding therapist and took 40 cc’s. A full bottle is 65 cc’s these days but that’s still better than where she was at last week. She’s not nearly as fussy either. She’s still fussy and has her issues, but its nothing compared to last week.

So rest easy for the moment and keep checking in! I hope to send the email out that she’s back to taking at least one full bottle every day soon.

Prayers for her ability to eat and comfort.

We love you all.

Happy October Friends,

Well, I wish I had some great news but unfortunately Abby is sick. What’s worse is that she got it from me. All our precautions and hand washing didn’t seem to help. It hasn’t gotten much worse but it hasn’t gotten any better either. She is very stuffed up and she has a bit of cough. This, on top of her surgery last week has turned Abby into a very unhappy little baby. Last night was a rough one for sure. I know all you other parents out there can attest that there aren’t too many things worse than your baby screaming hysterically and you have absolutely no clue as to why. The helplessness we felt last night was horrible. Is her G Tube irritated again? Is the shunt working properly? Is she constipated again? Is it because she’s sick? Can we give her anything? On top of Abby’s extreme fussiness and crying lately, her feeding has taken a huge step backward. After her first suck from the bottle Abby will freak out and start screaming uncontrollably and it will take a long time to calm her down. Again, we have no idea why. Kelly has a feeding therapy appointment with Abby today and we’re hoping we’ll get some feedback as to what could be happening.

Thanks to you all for checking in and please keep our little Abby in your prayers. She’s been through so much and it’s her turn to feel better.

We love you all.