Friday, November 12, 2010

Prayers are Working

Carolena is doing well. Very well as a matter of fact. Her eating is still atrocious and she is still vomiting a lot but her heart...her heart is doing well.

The past few weeks we saw the GI doctor and both of C's cardiologists.

As usual, the GI visit was useless and unhelpful. The doctor told us C's issues with eating are behavior related. Ummm, ok. So C waking up in the wee early hours of the morning from a sound sleep and puking everywhere is a learned behavior? Really? It has been a really long time since I went to medical school (you know, like never) but I really don't think my 15 month old daughter is saying, yep, now it is time to wake up and puke everywhere just so mom and dad have to wake up with me. Not seeing her retching and dry heaving as a conditioned learned behavior to attract attention either. Oh well, again, what could I possibly know since I do not have an MD after my name.

C is back in feeding therapy. Well, kind of right now. I am still waiting on the therapist to do her final report and then we will see which type of services C will be getting. I am going through the Early Steps program as my insurance does not pay for feeding therapy. Early Steps is an early intervention program for children birth to 3 years old who qualify based on medical necessity. C has been seeing an infant/toddler development specialist now for the last month and she is the one who called in for a more advanced speech/feeding therapist to help with C's eating. Of course, both ladies are still thinking the same as us, C does have some behavioral refusal not due to aversion but due to some medical issue with her guts. So, we will see how much further we go until we are all insane.

End of October C saw the electrical cardiologist for her 3 month check. She had a 24 holter monitor and then another ecg (ekg) at the office. The EP doc is very happy with where she is. He is seeing no arrhythmia activity on the holter and thinks the current medications she is on are doing a fabulous job controlling the arrhythmia. I would really have liked to hear him say that he does not think she needs the meds anymore but I can't always get what I want. I did get a small reprieve though in that the EP did allow us to cut back to giving C her one med 3 times (every 8 hours) per day versus the current 4 times (every 6 hours) per day regimen she was on. Having to get up at 12:30am to give her meds every night was really getting old. At least now we have one fewer sleep disruption...yay! The course for the EP is pretty much status quo until she is ready for her Fontan surgery between 2 and 3. He did say that once she gets to the time to do the pre-Fontan heart cath he would consider taking her off her meds. He wants to get the most accurate info during this EP study during the cath. Since this will not be happening for at least a year, I will not worry about that right now.

Even with the good news from the EP doc I was still really worried about C's appointment with her regular cardio yesterday. With the slight schedule change in C's meds and her being sick on top of everything I was just totally freaked out (and exhausted). C got some tummy bug that had her vomiting (even worse than usual) and diarrhea so bad for almost an entire week. I at first was not sure if she was sick but then I got it too. And my mom. And my boss. I guess C is just a little giver, what a sweet child she is. Anyway. Fortunately she did not run a fever (can trigger her arrhythmia) and with her g tube we were able to keep her hydrated. Otherwise she would have been in the hospital. Poor baby felt so bad. She would just stop in the middle of what she was doing and lay down. So not like her and also indicative of heart failure (taken in conjunction with lack of eating, increased vomiting and general lethargy). Nothing is ever easy or straight forward with C. With her feeling so poor and me being sick two weeks in a row and my car still having issues and Kevin being out of town for the better part of two world was really not right.

But, as with all things, prayers are bringing us through. As I already mentioned, C saw her regular cardio yesterday (does all the structural/defect stuff). She got a great report from him. Holy cow! According to her cardio she is doing awesome. Her echo looked great, her function is good, her flow is good, her confluence (the pulmonary vein stuff) looks good. He was amazed at how big she has gotten and just giddy with how right on developmentally she is. So far she continues to be on the top end of the spectrum for babies like her and we are beyond blessed and grateful. We do not need to go back (unless C has issues) for another 3 months. Hurray! He cleared us to travel and said "we absolutely have to go" and see all my family in Alabama. Of course we will be on super, heavy duty hands off, no sickies, no holding mode but at least everyone will get to see her. For that I am truly happy. Her cardio also delivered some other good news for me personally...he said he likes to have the Fontan done around 2 1/2 to 3 years of age (on the older end of the spectrum). Even though C will be more aware I am really ok with her being a littler older and for purely selfish reasons I want her around for all the holidays next year as well. If they did her Fontan right at 2 (August) she would more than likely miss all that stuff. I will not go into too many details but the Fontan will be extremely hard on C. There will be a lot her body has to do to adapt to, especially the artificial circulation, and there are a lot of kids who just don't make it. But, right now, C is doing remarkably well and we are going to spend the next year just being and doing.

Monday, November 1, 2010

It's Been Awhile

There are so many things I have missed posting and wish I had done at the time of the event, but life has been so ridiculously crazy I never have time to do anything.

The latest and greatest since C's birthday:

1) We had an awesome party for C. So many friends and family were able to come and celebrate the day with us. C had a blast seeing so many people. I am not too sure what all she was thinking but at least no one was coming at her with anything sharp, pointy and possibly painful. Yay! She did manage to get the icing on her cake all over herself without getting one bit in her mouth. Most post some pictures because she truly looks like she took a bath in pink frosting.

2) We did get to go on vacation right before C's party. We took a week and went to the Keys. The boys had an awesome time as usual...we snorkeled and fished and went out on the boat. They just love having everyone together all day and no stress. Poor boys, having to live with us and all our stress. Love being able to take them away for a bit and let them just be "normal" kids.

3) I was in a car accident on August 5. Yep. Great timing. And guess what, my car is now back in the shop for the 4th time since being repaired initially. I really, really, really detest my insurance company. My car was damaged because some guy thought it would be just fine for him to make an illegal left turn on a red light and plow right into my car. Lovely. I have been fighting with both insurance companies since August and still do not have my car back and repaired correctly.

4) Kyle turned 7 in September. We decided to give him a choice this year on what he would like to do. We let him choose between having a party or asking a couple of his friends to go to lunch, a movie and the toy store. Kyle chose the movie option. Later that night he told me it was the best day he has ever I guess we hit the right celebration for him.:)

5) The boys are back in school and doing well. Some minor glitches here and there but overall they are loving school. I have teacher conferences today with both boys teachers.

6) Kyle is now doing cub scout and tennis in addition to go-karting. Todd is also doing tennis. Between all the kids activities and work stuff and football games and C's stuff we never get a break. We are constantly on the go. I feel like Kevin and I rarely see each other as we rarely do anything together as an entire family. One of us always has to stay back with C as she cannot be out and about too much.

7) We lost the nurse who was taking care of C at home a couple days a week so she is now with me at work full time. We are trying to find someone new but with all the requirements necessary and insurance not paying for anything like this we are having a hard time finding a replacement. Has made it very interesting for all of us. C is now 14 mos old and is very active and mobile and still CANNOT be in a daycare of any kind. And I absolutely HAVE TO HAVE my job. Rock meet hard place. My boss is awesome and very accommodating but eventually we need to make a decision on where we go from here.

8) Kevin's work is still shaky so we are all holding our breathes and hoping things change after this election cycle. He is working way too many hours and has way too much stress and no outlet in which to re energize himself. We really need there to be more hours in each day just to get a break.

9) C did see the GI doctor again in beginning of October and we are still getting the same answers. GRRRRRRR. We are back in feeding therapy but getting the same finger pointing, running in circles crap. So darn frustrating. She also saw the electrical cardio last week. As far as the electrical cardio is concerned she is doing great. The medications are working and keeping everything in check. Her 24 hour holter looked fantastic, nothing to report and her office ecg looked good too. He did say we will be facing a decision before her next cath on whether to take her off the meds prior to the cath to see if they can induce the arrhythmia during the electrical study. If they leave her on the meds and are unable to induce the arrhythmia then they cannot be 100% certain that it is gone. So, that will be super scary but not something we need to do right now.

C is currently puking up at least 3 times a day. She only eats 5 times. Great ratio. But she is still gaining weight. She is currently 20 pounds, 3 ounces. She is back on the charts...hurray! She is just the sweetest thing. Follows her brothers everywhere and is in all their toys. Bless their hearts, they are very patient with her and pretty much let her do what she wants. Sometimes I get, "mama, can you come get her... PLEASE????" but not very often. She is crawling like crazy, standing up everywhere, taking a few tentative steps while holding on, babbling like crazy, and pretty much doing all the things a "normal" baby would be doing...all except the eating. She is now on Vital Jr. and we have tried to eliminate every thing she may be allergic too. We keep trying to "fix" each little issue in the hopes that fixing all the little issues will eventually add up to her tolerating and eating all by herself.

I will eventually get some more pictures up here as well. Have to show how big our little C is getting.