The Journey Continues: Finding Routine at Home

June 17, 2010

So, what have the past number of weeks been like since we continued this journey with Mikail at home?

Medication:

Mikail receiving his medication one morning.

Because Mikail had seizures right after birth, he is on an anti seizure medication (phenobarbital) that is administered daily. At first it was administered at 10 p.m. but we felt that the medication bothered his stomach so he was fussy at night time, not allowing us to sleep much. This in turn was affecting my own healing process because I was not getting the rest I needed. So, under doctor supervision we changed the administration of his meds to 9 a.m. and find that dealing with his fussy time during the day is so much easier and I am feeling a whole lot better too. It means I have to deal with his fussiness alone because Jason is at work, but in reality it is not that difficult now that it is during the day. Changing the administration time also means that during the week I am the only one there to administer the meds and as he gets older, he gets stronger and smarter. So, he has been fighting back and has learned to clamp his mouth shut when the syringe comes his way. Smart little guy.

Being on this medication also means that he has to be weighed weekly and his blood levels checked bi-weekly. As he gains weight he has to be given more medication and then his blood also has to be checked for levels since the meds can be toxic if too much is given. So, every other week we drive out to our hospital and have his blood taken and weight checked. Then the following week we take him to the Health Centre here in town to be weighed and I call in his weight and meds are changed if needed.

By 3-6 months of age we are hoping he is able to come off the medication. If he has no seizures without the medication we know that his brain has healed. There is a possibility that the seizures will continue and this would then most likely mean a diagnosis of epilepsy. We will cross that bridge if and when we come to it.

Appointments:
Since our return from the Stollery Children's Hospital we have discovered that we are very well taken care of and being followed very carefully. We will have a follow up appointment with our neurologist at the Stollery in August. We will also have an appointment at the Rehab Clinic at the 6-8 month stage of things. Currently we see our family doctor and the pediatrician who have referred us to Occupational Therapy (O.T.) and Physiotherapy (P.T). Today was our first O.T. and P.T. appointment and it went really well. He was carefully checked over and observed and I was given physio exercises to do with him on a daily basis to strengthen his right side. Most of them we were already doing just in the way we play with him, so that was kind of neat to find out. We will go back in a month to get the next set of developmental exercises. I was so impressed with the compassion and care of the Physiotherapist and the Occupational Therapist. This will all be a good thing. Other than this we are on a few waiting lists for a few more programs that will help support us as we give Mikail the absolute best we possibly can to give him as 'normal' a future as possible.

My Healing Heart:
This is an ongoing thing. I think I am doing great and then someone with great compassion will ask 'How are YOU doing in this all? Do you have a support system in place?' and I burst into tears. And this too is a good thing. It is part of the journey. So, when the question is asked I explain that I am doing good and this is true. Yes, I have my moments and really have to work on my thought patterns so I don't go down the road of 'self blame' or dwelling on the 'why?' of it all. Considering everything I am doing really well and loving every moment of being a Mama to this little miracle...yes even those night time feedings and awake times when seemingly everyone else in the world is enjoying sleep. I choose to enjoy those moments, because, to put it simply, I am blessed to have them. I am blessed to have this little angel in my arms. I cannot imagine the alternative of having an empty baby room and rocking in the rocking chair with empty arms. My heart aches for the Mamas who have to go through that. So, when I wake up to Mikail's cries and wish I could go back to sleep and have a solid night's sleep, I quickly remember how blessed we are to be able to hear his cries at night and be able to get up with him and feed and change him in the wee hours of the night.