My baby's growing up....

Much has transpired in one months time. Elin is now 9  months old. In three short months we will be celebrating her first birthday. I can't believe the time has passed that quickly.
I have never been very good at being patient and I don't like "gray area". Black and white please and the quicker the better. I have learned over the past month that nothing is quick and absolutely nothing is cut and dry, in other words- we have no answers- only more questions.

We have had countless appointments with neurologists, neurodevelopmental specialists, pediatric optometrists,  neuro geneticists,  and other specialists with really nothing to show for it. We have a plan; or a course of action; but it will take many months- perhaps years to find anything concrete if we ever can.

My plan is to keep Elin alive, well, and happy. We are doing everything in our power to enrich her life and make her giggle and smile. I CAN do that. She is eating up a storm- trying new foods all the time and liking just about everything that passes by her lips. I hesitated to give her yogurt, knowing a dairy allergy sent her sister to the hospital, but guess what- Elin isn't allergic to milk. Hooray for small miracles.

The meds were working wonderfully- until they didn't......
Last week Elin had two seizures- one resulting in another ambulance ride to Children's hospital. The first one was like the other seizures she had, she stopped breathing, we called 911, and thankfully she started breathing again on her own before they arrived- it took them over 10 minutes so that would have been a disaster. She snapped out of that one fairly easily and after discussing her event with a neurologist over the phone we decided to keep her home.

The second seizure is another story. This one was unlike her others and lasted until the medics arrived and administered Diastat to stop the seizure- she was in it for over 30 minutes. We hesitated to call 911 because she was breathing and she seemed like she was going in and out of it. But once it was apparent that she wasn't just bouncing back we called for help. I rode with her in the medic car to Children's on Friday at rush hour. Our ambulance had to split the lanes of traffic on the 520 bridge- Elin was fast asleep with an oxygen mask and monitors- she missed all the action. We were admitted,  Myles drove in to meet us, and Anya stayed home with Oma. We left the hospital 3 hours later with our own Diastat in hand and a substantial dosage increase of her anti-seizure meds.

So where does that leave us now? Exactly- I don't know. In order to sleep and function like normal people we have to trust that we will be there when/if she has another seizure. I have to believe that since she hasn't ever had one in her sleep she won't ever have one while sleeping. It's crippling, frustrating and insanely frightening but it's all we can go on.

How is Anya handling all this? About as well as anyone could hope a child could. She is frightened by the events and upset when Elin has to go to the hospital. We tell her that her sister is sick and she wants me to make sure Elin doesn't cough on her because she doesn't want to get sick too. I've explained the difference but to a 3 year old sick is sick- no matter which way you cut it.  She feels the stress and acts out for attention. This is taking it's toll on all of us but we are all maintaining our positive attitudes and dealing with the circumstances day by day.

PT is going well. Elin is getting a lot stronger and every week the PT (Tiffany) is excited by the progress she is making. Its encouraging to see her up on her elbows more and tolerating tummy time. She is getting better at sitting up but is still far from doing it on her own. She is just starting to get better control of her arms and hands so she can start to feed herself a little. We are working on hands together play. rolling over and more weight bearing on her shoulders. We started a class through Kindering (the resource center we use for PT) to meet and play with other kids with developmental delays. Elin loves it and it is a great place for me to discuss issues we are facing and learn from other parents who have been through the process recently.

As for the listening and speaking, Elin is coming along well. We are still working on getting more consonants but she is VERY vocal and seems to respond really well to conversations and song. She knows my voice and looks for me when I come in the room- that is huge! She cracks a huge grin every morning when I get her hearing aids on. She is cranky if we have them off her for any extended period of time (which is rare anyway.)

Now onto regular baby stuff. Elin had her 9 month appointment last week. She is 15 lbs 6 oz and 26 inches tall. She got her two bottom teeth last month and seems to be chewing and drooling like crazy so I think more are on the way.  She has developed a bit of a temper and will let you know if something is bothering her. She basks in one on one attention and loves to play with her sister. Anya helps by grabbing toys for Elin and putting her binky in her mouth. She is gentle and sweet with her- It warms my heart to see her be so compassionate with her sister.

We took Elin swimming for the first time last month. She LOVED it! The pool was extra warm that day and we had a wonderful time swimming as a family. It was one of the first things that made us feel "normal" again. Anya enjoyed sharing the pool with her sister and Elin got splashed by her older sis a couple times. She is more buoyant than Anya was at her age, she must have a little extra padding.