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

Saturday, February 1, 2014

Wha?

And please don't ask me why blogger changes my font and formatting halfway through my posts.  If you can help me fix it puh-leez help me out here. It's throwing my OCD into full swing. 

Modern Day Medusa

We are home and thank God!  72 hours spent with a child wired up and only able to be in her room or the playroom makes for a LONG 72 hrs. The EEG went ok but the results were quite weird and not at all what anyone expected. Such is life with Anna. Weeks before this EEG we began weaning Anna's tegretol. We did it over about a 4 week period and that went well. It was very strange that as her dose went down we were not seeing any seizure activity. She got her last dose of meds the night before we went to the hospital. We got there and I was a meeting with the NP and also told her about the leaky gbutton. Luckily they arranged it where that got switched out while we were there. That was nice because it eliminated another trip there. Anyway- so after the first 24 hours the Dr came to tell me the amazing news- her EEG was completely normal. He said he was thinking it might be possible that Anna had outgrown her epilepsy. His plan was to continue to monitor her for the full 72 hours and if the EEG stayed normal he would send her home off of medication. I could not have been more excited...or scared. It was clear that off of the tegretol Anna was a totally different kid.
Her memory problems were certainly not gone but they were so much better. For example, normally people will say ,"How old are you Anna?" and she will look at me or the person asking the question with a blank stare. Off of the tegretol she quickly piped up "I'm 6."  She finally was able to count to 10 without skipping any numbers. That is huge. So anyway I knew having her off of the tegretol could open so many doors for her as far as her memory and learning are concerned. Also thinking that maybe the epilepsy had resolved made me able to think about her future with a little less trepidation. But then there was that nagging feeling that what if it's not over?  What if this is the calm before the storm?  So I spent that evening really thinking and praying about it and knowing that I have to trust the Dr. I have learned that if you have doubts about the Dr then you need to move on. Dr. Hernandez is amazing and I trust him. So I decided to do what any rational person would do- talk to him about it. So I did. I talked to him about the seizure she had on her birthday which was December 3 which wasn't that long ago. I showed him Anna's teacher's description of the events that day.  She said,"As I recall, she was very hyper and excited about her birthday.  We went to lunchroom and began to eat.  I looked at her and she was staring off. I said her name a few times. She did not respond.  Mrs A was sitting next to her so I asked her to get Anna's attention.  She touched her arm to get her attention but no response. I called nurse. We laid her in floor until seizure was over (maybe 2 minutes).  We carried her to nurses office and monitored her until you got there."  
After seeing this everything changed and he said going off of the medication was no longer in the cards but trying a new medicine with less side effects was. Again I was sad and relieved all at the same time. There are so many weird emotions that go along with all of this. So she is starting on Lamictal. The dose escalation will be super slow to do everything we can to avoid Stevens Johnson Syndrome. Apparently slowly up titrations the dose reduces the chances. When I say slow I'm not kidding. It is Feb 1 and she will be at full dose on April 13.  So for so good but the dose is so minimal right now I wouldn't expect to see any side effects anyway. So that's how it went. I am so thankful for a Dr who sits down and explains and listens and who makes me feel a little less crazy. I always doubt myself and he is good to reassure me. I need that.