Friday, October 30, 2009

Uncle

Cartoons & Breakfast

Chillin'

We went for Anna's GI appointment with Dr. O today. I was thrilled to find out we were indeed there on the right day this time. Anna had gained a pound since the last visit which was 2 months ago. I have never been so proud of a pound in all my life. Dr. O and I discussed Anna's progress a bit and then I just finally told him that Kenneth and I are not opposed to the Gtube and are actually ready for it if he feels it is appropriate at this time. We have fought long and hard but we have lost this battle. We have tried everything we know how to do but things are just not getting any better. His response was, "then let's get it scheduled." It seems so strange but I have nothing but peace about this decision. We have spent almost 2 years now obsessing about every calorie and every bite and every ounce that we could get Anna to take and we can finally take a deep breath and let that go. If she chooses to eat, great, and if not, that is fine too. I can go to bed at night not fearing what will happen if she gets sick or have to listen to her little tummy growling and yet still not be able to get her to eat. It is kind of like that by surrendering we are actually gaining some control. Dr. O and I discussed the new feeding plan and decided it will be to let Anna eat whatever she wants during the day and put her on a pump at night. We will start slow and increase her feeds until she is tolerating the right amount. She will be using a formula called Peptimen Jr. It is hypoallergenic since she still does not really tolerate milk products. They used to put a Gtube in first and then weeks later go back and place the Gbutton but Anna will get the button right from the start so there will be no need for another surgery in the near future. We will have to just stay overnight at Cook's for one night for pain control and to make sure all is working well. It is hard to put into words how I feel about all of this. It isn't that any of this is what I wanted but it is the best thing for us, right now, given the circumstances. It is our prayer that this Gbutton will allow us to get Anna off of all of the meds she is on and allow her to sleep naturally because she will no longer be starving. It is so hard every night to load her up with adult doses of adult medications and know that they are really not so good for her. So what some might feel is devastating we are smiling about because we know it has to get better from here...

Monday, October 26, 2009

Such A Monday

Anna woke me up for the third time, it was finally 6:30am though so I decided to go ahead and get up. I cooked some biscuits, got Carly up and ready for school, dropped her off at school and headed home to shower. Anna and I got ready and loaded up for the 45 minute trip to Denton for her GI appointment. I had been in deep thought about this appointment for awhile and was so glad it was finally here. We got to Denton at about 10:15 and her appointment was at 10:30. I was doing SO good! We went to the desk to check in and I told the receptionist we were a few minutes early. Turns out we were a few days early, the appointment isn't until Friday. UGH. We drove back home. At least Anna took a little nap in the car. I had a nice lunch with my mom. Anna refused to eat anything. I came home and chilled for a bit and went to pick Carly up from school. Carly is a compliant kid who really aims to please. She is very afraid of being in trouble. She is a nervous Nellie. She attended the same school for 2 1/2 years and never once got in trouble. I know that is impossible to believe but it is true. She was just that good. Well, all good things must come to an end. And they did. Today. I am not blaming it on the new school, that just happened to be the scene of the crime. I walked to Carly's classroom and her teacher met me at the door to inform me that Carly had a bad day. I assumed this meant she had been whiny or something. I was so wrong. Instead, she decided during nap time that she didn't want to nap so she got under a desk and took a marker and colored the carpet. She had an accomplice and they were both sent promptly to the Principal's office. They got to spend the afternoon's playtime scrubbing and cleaning the carpet. Nice!! She got quite a lecture from Kenneth and I, she had to write an apology to her teacher, and she is not allowed to use any art supplies (her favorite things) for a week. She is devastated but I am pretty sure she gets the point.

"Dear Ms. Blankenship, I am sorry for coloring on the carpet. I will not do it again. Carly"

Sunday, October 18, 2009

The Amazing Brad and His Royal Subject

I cannot express how incredibly wonderful our speech therapist is! Brad has worked so hard with Anna and she really has connected with him and seems to want to please him. He is SO patient. He has to change activities with her about every 2 minutes. She keeps him on his toes. Not only is Anna learning more words, her words are becoming more clear. She has perfected Mama, Daddy, Carly, up, kitty, hungry, more, thank you, yes, no, cheese (she loves the camera) and drink. This may not seem like much to some people but to us it means the world! We were really worried for sometime that Anna might not talk. We are really starting to see some progress now. She is also making more noises and attempts at different sounds. We still rely on signing too but hope that some day she will be 100% verbal. Luckily we will have Brad until Anna turns 3 and ages out of Early Intervention. I will try to snap a picture of him during speech this week so that you can visualize the amazing Brad. Until then, here is a video of perfection... (Again, you will hear it better if you pause the music feed)

video

P.S. The Valium is not really helping Anna sleep. I am beginning to think about a rubber room for Anna and Kenneth and I will take the Valium. That makes it a win win situation, right?

Friday, October 16, 2009

Dexterity?

For all of the areas Anna is behind there are some things she is doing that seem far ahead to me. For example, I went to bed last night and turned my alarm on never paying attention to what the clock said. I usually look at the time on the channel guide on the tv and really see no need to compare it to the alarm clock time. So I went to sleep around and slept until about 2:30 when Anna got up. She is not sleeping again! I was up with her until about 4:45 and finally she and I both fell back asleep. The alarm went off at 5 and I got up to get ready for work. I really had to leave the house on time because I had to drop the kids off at the fire station since Christy is out of town. Every time she goes out of town I am reminded more and more of how blessed we are to have her in our lives. She comes over on the mornings I work and Kenneth is still on duty so I do not have to get the kids up so early. She is at our house at about 5:45am- yes, she is a saint. Anyway, so I got up at 5 and took a shower and as I got out of the shower Anna peaked at me through the bathroom door- she was up again. She "helped" me get ready for work. I was all ready and it was only 5:45 according to the alarm clock. I still had plenty of time...until I looked down at my watch and realized it was really 6:10. Anna had at some point the day before reset the time on the alarm clock. Needless to say I was late for work. But hey, it takes dexterity to change the time so I'll call this one "therapy." It was a good laugh! I called the neurologist and discussed the not sleeping. She is getting up around 2 am each night and staying up from then on. It is killing us! He said to continue to trazodone and we have added valium as well. I started her at half of the dose he prescribed. I hate giving her all of these drugs but don't know what else to do. She needs sleep and so do Kenneth and I. So she got her first dose of valium tonight, wish us luck!! She is talking more and more and adding words to her signs. Here is a tiny little clip of her saying "more." (You can hear it better if you will pause the music feed first) She was motivated by gummy lifesavers. Who wouldn't be?


video

Monday, October 12, 2009

Is It Me?

What a great weekend! Everyone is well and we were able to visit Arbuckle Wilderness (a drive thru safari type place) on Friday and then took Carly out for her special day yesterday. We took her to eat at a Japanese Hibachi restaurant and then to see Toy Story 3 in 3D. We try every now and then to take her out without Anna so she can have mommy and daddy to herself. Her needs get put second a lot due to all of Anna's problems so I try really hard to be sure Carly is getting what she needs from us. I know that she knows she is loved but I want her to feel like she can always come to us and that we are there for her no matter what is going on with Anna. It is pretty easy to tell when she needs special time. She quits minding and gets really whiny. Then we have a special day and she goes back to minding and having less whining. She kind of made me sad on Saturday. I had to work and she was telling me all about her day with Kenneth and Anna. She told me how they played with some other kids at the fire station and how one of them was "the same age as Anna but he could talk a whole lot more than her." I sometimes forget how noticeable her lack of speech is until I am snapped back into reality. Then I went to see my grandparents today and my grandmother was talking about how my cousin's baby who is 9 months younger than Anna is saying things like "Uh oh paskettios." Anna can say uh-oh but is no where near paskettios (spagettios). I know my grandmother is proud of all of her great grand kids but it is sometimes hard to hear where mine falls behind. Anna's speech is improving, don't get me wrong, but it still is no where near her age appropriate level. That is just another one of those parts of acceptance that slaps me in the face sometimes. Then with the whole eating thing. I am feeling a bit like a failure today. Last night I tried really hard and sat and made Anna sit and I fed her all of her dinner. It took what seemed like forever! I think I spent 45 minutes to an hour to feed her 1/2 a bowl of fried rice and a few bites of chicken. By the end I do not know who was more worn out, me or her. So she did eat, finally, but it was such a struggle. So now I am wondering if she doesn't eat because I don't try hard enough. I just don't know if I can spend 45 minutes to an hour feeding her every time she needs to eat which is like 6 times a day not including her milk. I could do it but then I would not have time to do anything else. Then I feel sad that "everything else" is coming before her nutrition. I do make the effort to feed her but usually she cries and runs away and I just give up. I try to let her feed herself and the same thing happens. I do not want to force feed her and I do not want her to hate food and eating because it will only make the problem worse. She has gained a little weight since her last check but she grew 3 inches too. She is actually worse off on the weight for length chart now than she was before. I am so sick of stressing about my child's eating. And now I am stressing about this, is it her or is it me?

Tuesday, October 6, 2009

Don't Believe The Hype

I have never had anything against pigs. In fact, I rather enjoy bacon and sausage and luckily, for the time being, my cholesterol can handle it. But this flu of theirs, I would have preferred that they just keep it. I wouldn't really mind selfishness here. But they did not keep it to themselves and it has creeped its way into this house. Although the media has hyped it up to be something to really be feared, it is surprisingly mild- so I am told. Luckily I am not the victim. I realize it has taken lives and made some really sick, but so does the regular flu which kills a far greater number of people every year. Anyway, Kenneth is a Type 1 diabetic. He wears an insulin pump and is well controlled with it. (I highly recommend the pump for anyone who is active and really wants good control.) So for some reason, if I think back to biology it probably has to do with the Krebs Cycle, Kenneth seems to catch any and every bug that comes through and this whole swine flu is no different. Since he is diabetic he got Tamiflu and is already feeling a bit better. He says this is nowhere near as bad as when he had the "regular" flu. He is just nauseated, febrile, and has pretty much slept for 24 hours straight now (yes, he is still breathing, I checked). The bigger problem is Anna. She is under 2 and also has a neuromuscular condition so she is quite susceptible and although this flu seems mild, most of the kids who have died from it have CP. So off we went today to our new pediatrician, Dr. David Goff, (who by the way is freaking awesome and I sooo wish I would have made the switch sooner) and he said Anna is the kind of kid who presents the biggest problem. She fits into the category of those who need prophylaxis when there is a confirmed exposure, but (there is always a but) there are not any studies out there on repeated use of Tamiflu (i.e. is it safe more than once, does it work more than once...). So, if she gets it now she will be protected for 7 days. After that 7 days she would not be able to take it again safely so if she got the flu then we would be out of luck. The infectious disease doctors at Cook's say nobody is really sure what to do about this group of kids. So together we came up with a plan. I am to call at the hint of a symptom and she will be started on Tamiflu. Until then we are just going to use common sense and pray, hard! He also talked about the G tube and he feels she needs it. He is going to speak with Dr. O about it. We follow up with Dr. O at the end of this month and we'll see where he wants to go from here. He also said the feeding clinic has good results but that the road to those results is treacherous and one that most parents usually end up hating. He said it is not nice and that it does usually require inpatient treatment. Again, no thanks...

The Teacher

A quote from The Water Giver by Joan Ryan

"For all we have been through , there is so little I know for certain except for maybe this: Motherhood is about raising - and celebrating - the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."