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.

The Neurologists are talking........

This is never a sentence you want to hear in reference to your 8 month old baby. Our little enigma decided to give us a crash course in neuroscience by spontaneously having seizures. The first one was mild- I called 911 because she was acting weird, staring off, drooling and gray. After they came to the house it was still only 8am and I had convinced myself it was my imagination. She was fine, but we went to the pediatrician just to check at 11:30. Yep- eating normally, acting normal, everything looked good until I put her down for a nap around 1:30. I just happened to peek into her room and check on her only to discover her staring off, drooling and turning gray once again. I picked her up, and she vomited all over me, turned blue, went limp and passed out. Freaking out I dialed 911 for the second time that day. Anya was peacefully sleeping and heard none of this. The firetruck came with sirens blaring this time and quickly administered oxygen to Elin. She wasn't snapping out of this one. Her eyes were rolling around and she couldn't keep her head erect. She was quiet also- which is totally unlike her. Since the same firefighters had seen her earlier that day they quickly recognized her behavior as different and worrisome. We called the ambulance and once my dad showed up to watch Anya, Elin and I were strapped in to go to Seattle Children's hospital. The ambulance driver was asking me questions but I would not tear my eyes away from watching Elin's every breath. She had fallen asleep and I wasn't going to let her stop breathing again.

Once at the hospital she was back to her normal self, happy and busy. Myles and my mom showed up. They took swabs to rule out infection and at this point they didn't believe her incidents were seizures. So she decided to show them. After feeding her she started staring off, I announced that she was about to do it again and a doctor came in. After that she had an IV put in and we were admitted to the regular hospital from the ER. We had a CT scan on the way up and were placed in a new room. Nurses and doctors were asking us to tell them our story again and she decided to do it again. This time more dramatically. They called a code blue and bagged her (meaning they but a bag ventilator on her) and a whole team of doctors and nurses came in to assist. At this point she was declared unstable and we were expeditiously transferred up to the ICU. Each incident became more severe and dangerous. She started having mild tonic movement during the last one that prompted the doctors to finally start thinking these were seizures.

In the ICU we had our own nurse that monitored Elin 24/7. She had her final and most frightening episode at 10pm. She was bagged for over 5 minutes and I was scared to death. I wasn't sure if she was going to pull out of this one. They gave her seizure medicine- first Ativan then Keppra and she came out of the seizure and started breathing on her own again.

At this point I don't think I could have handled seeing her go into another seizure especially since they were escalating each time. Thankfully we haven't seen another one since.
We stayed the night in the ICU- either Myles or I watching Elin (as well as the nurse) and the other catching 15 minutes sleep here and there. It was the worst night of my life.
By morning she was incident free and resting peacefully. Hopes of being released from the ICU were floating around the room. By 2pm we were being transferred downstairs to a monitored room shared by another seizing infant and her mother. Here we stayed for three more nights. Elin was watched carefully and her oxygen levels monitored 24/7. We were zombies trying to keep it all together. There was a constant flow of nurses, doctors, hospitalists, specialists and a few rare visits from our families to keep us busy. Honestly I don't even know what happened while we were there. We had to wait until Monday to have her MRI and then had to stay Tuesday night to speak to the neurology team about the results the next morning.
We already knew from her CT scan that she was missing part of her corpus callosum. The MRI showed us a clearer picture of her missing piece but really didn't give us any more insight into what was causing her bizarre seizures among her other established issues. We were released on Tuesday around 1 and nervously made our way home.

So what we know now is that Elin is epileptic and has partial agenesis of the corpus callosum.  Part of it is formed in the front and back but she is missing a piece in the middle. This particular part of the brain takes over 2 weeks to form in utero (which is eternity for that process) and to have just the middle chunk missing is abnormal. Her myelin sheathing is delayed and they estimate it to be at about a 3-4 month olds development. This keeps growing as she gets older but the brain is fully developed so her missing corpus callosum is permanent  Our neurologist has told us that some people can function totally normally with the entire piece missing, others never learn to walk. So we are prepared for anything in her future. We are trying to get more information to hopefully help us understand what caused her seizures and what we can anticipate for her future development. According to the neurologists, Elin is "writing her own book" so I guess in some ways she remains a bit of an enigma.

She is stable on Keppra and seems to be unfazed by the entire event. Ironically we noticed a huge leap in her motor skills in the hospital. We were skeptical of our perception of her skills however, thinking maybe we were reaching for a silver lining. Turns out she has made some major progress. We had her physical therapist out this week and I didn't mention anything to her about our observation of Elin's skills. After only spending 5 minutes with her she was amazed at how much Elin had changed in such a short period of time. I then shared with her our thoughts and by the end of the session, her assessment was that Elin had improved dramatically from just 2 weeks prior. The PT said it was unexplainable  When we mentioned this to the neurologist she thought perhaps Elin had been having minor seizures all along delaying her development and now with the medication the seizures were being controlled. All I know is that it is one piece of good news that has come out of such a horrifying experience.

In some regards- Elin just pushed us to do some planned tests a little quicker. We already had plans for a CT when she was one to get a better picture of her inner ear anatomy. Now we have that done. The optometrist can use the  MRI to see her optic nerves which might help with her eyesight issues. And we have an answer to our questions about her developmental delays. We don't have near enough information about her prognosis however. That will come with time.
Where do we go from here? Well- we have a consultation set up with neuro-geneticists in two weeks to see if we can pin point some kind of syndrome. We will be testing chromosomes and genes to get a better picture of whether or not this has a genetic cause. We are living our lives as normally as possible. We call it our "new normal". Do we check to see if she is breathing all the time- yes. Are we on edge constantly- yes. BUT we have to trust the medicine is working and she will behave. It's a long road back to developing that trust again.
In the end, we love her more than ever and feel blessed to have such a vibrant, tenacious little person in our family. She WILL surprise us all.