Houston, Keira has gained 2 pounds!!!

This is in just a little over 2 weeks. She is tolerating her feeds well through the G-tube, has more energy and got her cute little cheeks back. Three days after her operation she started to crawl on all fours for the first time. She moved slowly, but she was doing it. :)  (and still is) She is still moving slowly, but the physical therapist we met with said that it usually takes over a month for them to get back up to speed again. She was pretty impressed with how well Keira was doing when she met with us at our house on Monday.

Keira is getting wrap around care. This means that she is getting services from the Visiting Nurses and they all come to our home. She has a regular nurse to help with the G-tube aspects, a Physical Therapist that will come 2-4 times a month, a Speech Therapist to come every week and OT every week. They are going to try and close the gap and get her back to where she should be. I never thought that she would get this type of care so quickly. I am thrilled to say the least. The even bigger bonus is that I really liked the PT and Speech Therapist we have met already. The Speech Therapist lives in my hometown of York. She is also still being seen by the Pediatric Surgeon, A Nutritionist, A GI Doctor, her Neurologist in Maine, Epilepsy Specialist in Boston and her Primary care Doctor.

She has already regained some of the skills she lost too and was showing off for the Speech and PT ladies. I am not sure if the Medication, Epilepsy or lack of nutrition is causing the delays or a combination of all three, but the nutrition part has already made a HUGE difference. Hopefully, they will find a cause for the eating seizures or a medication that works. Finding medication that works seems to be a crap shoot unless you know what the cause of the seizures are and even if you know the cause they don't work 100% all the time.

Her seizures had definitely reduced and we had 2 days where we did not see any at all. Then we started to see them creep up again. I called the Neurologist because you generally give Depakene 3 times a day and the Neurologist on call prescribed it for 2 times a day (not a Ped Neuro) when we had our Depakote debacle. Our Neuro said to do it three times and this has reduced them again. She only has them when overtired now.  This is why nap time is crucial. The times we saw no seizure activity was when she had great nap days.

We go to Boston again on November 15th to see a Pediatric Geneticist. We have no idea what will happen, but I assume it will involve more blood being drawn. The Epileptologist from Children's insisted we do the Genetics in Boston.  He was fine with the G-tube surgery being here, but the Genetics piece was not to be done in Maine. lol 

I put my Google PhD on hold and will be concentrating on the progress that Keira makes instead of worrying about what she may or may not have.  I will also be working with her on all the homework we are given from the different specialists. What I do know now, is that what she is going through is extremely rare and no one has come across a case like it before. That may be why I can't find anything about it on the net. She is getting an Upper GI to see what amount of liquid she can take before having a seizure so that the Speech Therapists will know what they can work with and what is going on when she is swallowing. I know what those results will be already. ;)

She is STILL a really easy going baby and is my easiest child bar far. (can't talk back ;) ). However, getting her ready for the day and for bed at night takes one hour each time (and she does not eat food).  We have to change her feeding tube bags, fill them with her Pediasure, give medication (It's tricky), change the gauze, prime the machine, put tape around the medicine port so it does not leak, thread her tube through her clothing so she can not get to it among other things I am sure I have forgotten. Seth is finally doing this on his own. (He won't do things until he has to, so I have left the house at night a few times)  Hopefully, we can get into some sort of groove to cut our time down.

The site around her G-tube may be infected so we are off to the Surgeon's office tomorrow. He said that there was a 100% chance that we would be back and he was right. It is red and sore around the site and some yellow puss is coming out (yuck, I know)  I try to keep it as clean as possible, but these things can't be prevented and are very common. 

This is a picture of exactly what Keira's G-tube looks like, but it is not Keira. That tube puts the food right into her belly. Eventually we should be able to bolus right into the button instead.

I am sure there is more that I am forgetting to tell everyone, but this is where we are at for now. We wish we did not have to go through the process, but we try not to think about it and cherish the precious little baby we have and all the accomplishments she is making again.

These are pictures of Keira

Almost done with her 6-12 month clothing because of her height, not her weight. :)

Got Hair??  Look at her chubby legs :)