Sunday, April 13, 2014

Coming Full Circle

After staying frustrated with our current GIs office for quite awhile now, they officially pushed me over the edge last week. I love the Dr. I do. He is great. That's the problem though. He is so good that he has too many patients. He can't keep up. When I call to make an appointment the soonest available is 2 months away. I could understand if we were new pt's but we aren't. We have been there for almost 6 years. So the solution (according to the office) is to handle as much as possible over the phone. I'd be fine with that if I could actually talk to (or even email) the doctor.  But I can't. It's not an option. I have to leave a voicemail for the nurse or medical assistant who will then relay the message (inaccurately) to the Dr.  Then the medical assistant or nurse of the day will call me back with an answer which makes no sense because the Dr didn't get the correct original message. So I get pissed and tell them the right message again which they relay wrong again... This has gone on for as long as I can stand. I don't want my daughter to be a patient in a practice that is this busy. It's not safe and it's not fair to her.  So we are now coming full circle. If you know Anna's story you know the whole thing began in a GIs office. We went to find out why she wasn't gaining weight and were told by that GI that we needed to get her to a neurologist because she had much bigger problems than weight gain going on. We never went back. We ended up trying to keep all of Anna's MDs in the Cook's system. But now we are going back. I trust this guy. He clearly knew what he was talking about even back then. I don't remember him or what he looked like or what the office looked like. I think I've blocked all of that out. I would be lying if I said I am not scared to go.  I'm afraid it will bring back memories that are so incredibly painful that I don't want to remember. But we must go and we must do this. Anna needs someone to listen and pay attention.  She deserves it. So I'm putting my emotions aside and taking her tomorrow to where she needs to be. Please say a prayer for all of us- for her, for me, and for the Dr. We need answers. 

Wednesday, April 9, 2014

1-10 and Letters Too

Lamictal is the med we have dreamed of!  Anna has had only 2 seizures since beginning on it and they were short and mild.  It has taken from the end of January until today to get to the full dose but we are finally there. Anna has made more progress at school since the med change than I have seen in a very long time. She is counting without problems. She is remembering letters. She is recognizing numbers. She can enter "3-0-0" on the microwave all by herself and that is huge. One of my goals for her this year was to recognize numbers so that she could cook herself some popcorn or something like that with minimal assistance. Look at the last post at her spelling test. Now look at this:

Unbelievable!  I can't even believe it is the same kid. I cant explain how good this feels for me so I know it must be so amazing for her too.  I swear there is a genius in there just dying to come out. But of course with every positive we are usually certain there will be something not so positive to accompany it. Anna has been on antibiotics twice within the past 2 1/2 weeks. She will spike a high fever and wake up with a junky cough. She had a CXR which confirms she has been aspirating. I truly believe it is happening at night and not with eating and drinking. She had a swallow study back in January that was mostly normal and the choking she had been doing has mostly resolved. We continue to use small diameter straws with all liquids to help her. I hear her do this weird swallowing thing at night and I have been pretty sure it has to do with reflux. Years ago she was scheduled to have a fundoplication which we ended up canceling and avoiding with pyloric dilation. It seemed that the delayed gastric emptying was causing things to back up which was actually the problem. Once that was fixed things improved. Well the pyloric dilation is still in effect but now there is reflux and aspiration again. We may be looking at surgery again. I hate more than anything in the world to put her through it. It breaks my heart. But lung damage is serious and I have to look at the big picture. To say I am frustrated with the GIs office would be an understatement but that's a whole other post. Suffice it to say it would be nice to communicate directly with a doctor and not through staff who can't seem to relay a message accurately.  There will be more to come on this whole issue. For now we continue the augmentin and hope for the best. Thinking about putting her through another procedure makes me want to vomit.  Excuse me while I head to the toilet. 


Friday, March 7, 2014

I Don't Care

This is the second spelling test Anna has taken this year. It looks very similar to the first one. The only discernible letters on it are the "A" and "N" at the top. The first test broke my heart. The other kids were all writing letters and words and are spelling and reading. But guess what happened this time?  I don't care. You want to know why I don't care?  Because in the beginning this is how Anna's hands were:

This was her at 7 months. Her hands stayed in tight fists with thumbs in and she wore splints in hopes that someday she would relax her hands and pull her thumbs out. Guess what, she did.  Now she can hold a pencil.  Why else don't I care?  Because at the beginning of this year she could not write her name and she did not know any letters. She did not follow along with the class. But now?  She did and she does. She followed along and tried to write the words. And in my book that is huge.  If it's not huge to you well guess what- I don't care about that either. 

Thursday, March 6, 2014

Excuses, Excuses

The daytime feedings are actually going well.  Going well except for days like today when I hook her up and send her to school but somehow in the morning rush forget to actually turn the pump on and push run. Oops. So then she has carried a backpack with a pump and a liter of tube feeding around all day which I'm guessing puts us at minus a few calories today. Ack!!  I was saying I need to get it together better in the mornings to which Anna said, "Excuses, excuses."  She's not short on wit and sarcasm.  I added some Velcro and to the backpack and bought some patches so she can change them out daily and make the backpack a bit fancier. I spent about $15 and voila!

There are more but I'm guessing you get the idea. She thinks it's fun to pick the patch o'the day. I haven't weighed her but I'm pretty sure she's still somewhere between scrawny and malnourished on the scale. We will keep on keeping on and we are also adding Duocal to the Peptamen now. 

She's now having some issues in department #2 if you know what I mean. I won't go into too much detail because some day she will kill me for it. Suffice it to say there is blood where there shouldn't be. So now I get to play poop collector and she will have some X-rays also.

We are still working our way up on the Lamictal. So far so good. She was doing some weird lip smacking thing yesterday and I'm curious if that was some activity but sometimes you just don't know. I'll never know. Either way it stopped and so we press on.  I have begun to notice she has been very emotional also and I don't know if it's a phase, seizures, or the meds. Time will tell. 

I finally broke down and got handicapped plates for my car. I won't lie. When I got them my heart broke a little. They are on the car but I still have yet to park in a handicapped spot. Somedays I still can't believe we are those people that need those spaces. I'm not sure why it's such a hard/big deal for me but it is. 

Wow, much more to say but my eyes are not cooperating. Maybe tomorrow. 


Tuesday, February 25, 2014

3 Years Already?


This happened yesterday. This little boy who stole my heart upon his arrival turned 3. He is all boy all the time. He is full of sweetness and meanness all at the same time. He thinks he's 10 feet tall and bulletproof until he sees a shadow. He is talking up a storm.  He makes me crazy every single day but I cannot imagine a day without him.  Happy 3rd Birthday, Gabe!

Saturday, February 15, 2014

Struggling. Again.

I'm not sure what has brought it all back up. It could have been that one of my best friends had a baby after a hypertensive pregnancy and her baby is fine. Maybe it's because some other friends just had a baby that is still in the NICU and has a poor prognosis due to low oxygen levels. Maybe it's just the tides and waves of grief. I don't know. But whatever it is I just wish it would leave. I relive this crap every single day. What if I had gone to another doctor?  What if I had gone to another hospital?  What if they had delivered her earlier?  What if they had not just charted but actually done something about her dusky color and abnormal muscle tone and poor eating?  The truth of the matter is that none of it matters. It's too late and it doesn't matter. Every single day I go though this scenario and every single day I just try to push it away. I'm angry, I'm sad, I'm confused. I thought I had forgiven but now I'm not so sure. I'm trying though. I'm trying so hard to dig my way back out of this hole because I know it doesn't do anybody any good. I know I am commanded to forgive. So I will but I still have so much to work though and so much work to do. I'm just glad that I am learning that forgiveness and restoration are not the same thing. I started reading a book called "Forgiving The Unforgivable" and it is helping me. It is opening my eyes to so many things and for that I am grateful. So just so you know- having a special needs brain injured cerebral palsied epileptic tube fed kid is not a horrible thing. I love Anna and I would never change who she is. I just hate the struggles that she has that didn't have to be. Grief is real though and although it waxes and wanes it doesn't seem to ever totally go away. With every missed milestone there is grief but for every missed milestone there is a triumph of some sort that makes it all worth it. 

Anna started the new seizure medicine and we are moving the dose up ever so slowly. So far so good. She had a rash one day which scared me but some Benadryl fixed it and luckily it didn't turn out to be "the rash" that is so feared with Lamictal. She has had one seizure since being in the hospital. It's one more than I would like but I also know she is not anywhere near the full dose of medicine so I just have to sit and wait. I took Anna to the doctor on Monday for an earache. Her ear was not infected (yay!) but her tube is out and rubbing on her eardrum which is why it is hurting. There's not much we can do but wait for the tube to move. So yay, good appointment, right?  Wrong.  Dr. Goff pointed out that Anna had lost weight and her BMI is not even on the chart anymore. It would have been an easy fix a couple of years ago but now Anna is 6 and has opinions about tube feedings. Most of those opinions are not positive ones. We were able to compromise with something I found odd but if it works then ok. Anna is now doing continuous daytime feedings in exchange for not getting nighttime feedings. I have more hours in the day so I can get more calories in her. I'm also supposed to start back adding Duocal to the Peptamen to hopefully get her daily calories more near where they should be. She handled it fairly well this week and I'm so thankful for her teachers and aides who made it easy. 

We met with the DME company to order a medical stroller. That was a tough pill for me to swallow. It was great when we could just use the regular stroller and pretend everything was "normal".  Those days are gone. She doesn't fit those strollers anymore. Next will be handicapped tags for my car. I hate to do it but the long walks sometimes wear her out and she is burning precious calories that we can't afford for her to burn. 

I'm nervous about what we are going to do for school next year. We are to the point that we need to decide on Inclusion or not. There are so many positives and negatives and I just don't know what is right for her. That will be a whole other post and I'm not ready to go there yet. 

You would think after reading this that things are falling apart but honestly they aren't. We are doing well in so many ways. Anna continues to make progress daily. The other two kids remains just as amazing as Anna. They are each so different.

If you have a spare moment please say a prayer for some friends from church. Here's the story:
www.gofundme.com/saving-the-littlest-swann
You could make a donation too if you want.

Tuesday, February 4, 2014