In some ways having a child with special needs has been the most difficult challenge either Myles or I have ever faced. Beyond all the emotional ups and downs, we have a grueling schedule of appointments, therapy sessions, and assessments. Every child comes with their own unique set of needs, it's just that in Elin's case hers requires a bit more "work." BUT despite all the hardships and worry having a child like Elin brings; the person she is becoming eclipses all the negativity.
On our annual daddy/daughter dinner date the other night, my dad said something to me I will never forget. He said that Elin is a gift to our whole family. There is no better way I can think to describe exactly how we feel about her. She is our gift, and the best one we have ever received. She brightens our days (and nights still occasionally) with her constant smile and insatiable sense of wonder.
So in the true spirit of Christmas I wanted to share just exactly how lucky we feel to have such a special person bless our family. Hug your kids because every child is a gift and sometimes it takes a special time of year to remind us all just how lucky we are.
After a year of genetic testing we have an answer. Ever since Eln was diagnosed with hearing loss we have been trying to find the reason behind it. In March, when she began having seizures the need to find some sort of syndrome or diagnosis of any kind became even more important. Well I'm relieved to tell you that all our genetic testing has revealed our answer.
Elin has a chromosomal abnormality. She has a 1q44 deletion. This means she is missing about 11 genes on part of one of her first chromosomes. I don't know if you remember much of biology but basically everyone has 13 pairs (or 26) chromosomes- one from dad and one from mom. With Elin's abnormality what they think happened is somewhere during the initial divide and multiply stage of her development (remember a baby starts as 1 cell and divides to 2 then to 4 then to 8 etc...) a copying error occurred. So very early on in the pregnancy her cells that would eventually make up the entire little miraculous person we have today didn't copy correctly.
What this diagnosis tells us.
When the specific genes that are not present in Elin are absent common symptoms are seizure, motor delay, intellectual disability, hearing loss, corpus callosum abnormality and few other things.
So basically every medical issue Elin has can be explained by this deletion. It also gives us peace of mind knowing that she really doesn't have anything else up her sleeve per se. What we see is what we get.
What the diagnosis doesn't tell us.
How Elin will develop. There is a spectrum once again from somewhat normally functioning people with this particular deletion to some who can never live independently.
How do we "treat" Elin?
Same as we always have. Make sure she has her various therapies- (PT, OT, speech/language, feeding, etc) and believe she can accomplish everything in her own time.
We don't know what the future holds but we are looking forward to finding out who Elin can become.
12 days in Hawaii- what a glorious vacation. The first week we had our Aussie friends (Belinda, Jeff and Harry) visit and stay with us at the Northshore house. It was incredible to see them and Harry and Anya got along so well. It felt like we had never been apart and the whole experience reminded us of how wonderful it is to have such close friends. It really is a shame they live half way across the world- it's heartbreaking considering how well both families get along. Thankfully we have Face time and Skype to keep us in touch and air miles to help with the long hauls.
The second week the Piskels came out to the house. Anya switched from playing with one of her best boy friends to playing with one of her best girl friends. Lucy and Anya made a mean team in the waves and had a blast swimming every day.
Both girls were amazing on the flight over and it was actually our best plane trip to date with kids. 6 hours on a plane is a LONG time for a four year old but she napped and watched a movie so the time flew by.
Elin was laid back and relaxed in Hawaii. Of course our first morning was a rough 3:30am wake up but after that she slept relatively well and the early mornings were nice quiet times anyway. Our daily routine was to wake up around 6am, go on the deck for tea and papaya as the sun rose, run or workout, eat breakfast or walk to Ted's (the local bakery), play play and play some more. Anya napped hard and fell asleep at 8pm every night without a fight. The kids wore themselves out in the big waves and running around on the beach. Myles did a little paddle boarding but the waves were pretty big so he didn't get out much. We snorkeled at Turtle Bay and took the kids to the protected beach on the days the surf was really up. We watched some amazing surfing and the HIC Pro surf competition was being held the second week of our trip so Sunset Beach was full of spectators and world class surfers.
The weather was spectacular- 82 everyday, sunny with only a few rainy moments. Halloween was an experience. Since the weather is warm everyone is actually outside with card tables set up and baskets of candy. The kids don't ring doorbells- it's more like a big block party. The adults dress up too and lots of kids had old school style homemade costumes. Some of the "candy tables" had tequila for adults in dixie cups too. It was a trip. The kids loved it. Anya was Cinderella, Lucy was Snow white and a little girl we befriended who was on vacation with her grandmother joined us and rounded out our princess trio as Ariel.
Elin had her first appointment with the Cochlear Implant division at Seattle Children's hospital. We were fortunate enough to meet with the director of Audiology for Children's, Dr Norton. She was wonderful and Elin warmed right up to her. She was able to explain how the cochlear implant works, what the surgery entails, and the benefits (and limited side effects) the device can have.
We have always wanted Elin to be a part of the "hearing" community as much as possible and it looks as if a cochlear implant in her right ear will assist with that goal. Is it risky- not really. Can she loose what ever residual hearing she might have in the right ear- it's possible. But Dr Norton assured us that they have been implanting babies and toddlers with less severe hearing loss (meaning not totally deaf) and have had amazing results. So we are all in.
The next steps are making sure we get an accurate assessment of Elin's hearing via behavioral testing. This is no small feat. She has been less then enthused in the past about the conditioning game and sound booth so we are crossing our fingers. She did do some testing while we were in the appointment and she actually played the game- so there's hope. We are aiming for some conclusive testing after our trip to Hawaii and hope we can move forward with the process at that point.
In other news, Elin is still seizure free since July 4th. We are actually feeling like a "normal" family and have been able to let our guard down a little (something we all desperately needed). So now is the perfect time to go to Hawaii! We have been able to reduce Elin's medication by quite a bit which has helped her blossom. She sparkles now! It's is so wonderful to hear her laugh and play games with us. It has been an amazing few months.
As far as therapies go- Elin is chugging along. Every week our PT is pleased with her progress and Elin really tries hard when she is here- it's almost like she knows. Her speech is developing also- she has started babbling a lot more which is like music to our ears.
We have had some feeding therapy too because Elin still will not feed herself. She has no interest in picking up food on her tray and putting it her mouth- so that is a work in progress. She does however have an affinity for my green smoothies (kale, apple, berries, spinach- etc) which is surprising since they aren't exactly the tastiest things ever. Go figure- at least she gets her vitamins and minerals that way.
It's time to celebrate! Elin is showing progress. Her motor skills are improving and her new PT is very encouraged by her advancement. This couldn't have come at a better time. It is hard to watch your child stay stuck in one particular spot and worry about whether she will ever move more. Elin is rolling over both sides very adeptly and can tolerate time on her tummy now. She pushes up through her arms and really gets good extension in her back. Her sitting is coming along nicely and she can sit without assistance for long periods of time. Her reactions are developing as well. She can catch herself on an outstretched arm is she tips to one side and can bring herself back up from laying back over her boppy if she tips backwards from sitting. She also has been able to bring her toes to her mouth leading to much excitement over toe sucking so much so she might be developing a foot fetish!
She has begun to mimic movements. If we slap the table she slaps the table, if we take a toy up and down she moves a toy up and down. It is amazing to see her brain working as she figures out all these new skills. Our hearts are light with giddiness and anticipation at what she will be doing next.
On a more somber note, I asked Nicole (our PT) this week the question I had been avoiding asking for months- will Elin walk? She is 14 months old now and just sitting up- crawling is a ways off and walking seems like it might not be something we should hope for. But we still have hope and Nicole cautiously answered my question. She thinks Elin will walk with assistance most likely. This means she will have leg braces and a walker or other such devices. She isn't sure if Elin will ever walk without the help of some sort of device. BUT she said she isn't sure one way or the other. So basically we work on her PT religiously and have made it our goal to do everything in our power to get the girl to walk someday. This is our mission and it helps motivate us to push her through her exercises and spend all our time on the floor.
Her babbling is coming along. We hear ba and ga more frequently. We are still waiting for her first word but I think it's coming. We have been testing her response to the Ling Sounds - (m, ah, ee, oo, sh, s) We play a game where someone is behind her and makes the noise and the person in front tries to decide when Elin hears the sound. Some are easier then others. Moo for example- we can tell she hears that right away because her eyes steady and she smiles now because she knows her favorite soft cow toy is going to be handed to her mooing all the way. Other quieter sounds like sh and s are much harder to tell if Elin hears them or not. She still doesn't turn toward the sound so I think she has a hard time localizing where it is coming from.
On October 3rd we have our first appointment with the CI (Cochlear Implant) team and we are luckily meeting with the head of Audiology at Children's Dr Norton. We will find out a bunch more about whether Elin is a candidate for a CI and perhaps try some more behavioral hearing tests. This is good and bad news. Good because if Elin's hearing loss is so severe the hearing aids aren't helping this will indeed help her hear. Bad because it is a major surgery and she has to have something implanted in her brain. I would prefer not to mess with her brain given her other issues as I'm sure you can understand.
Why is Elin progressing all of a sudden? Perhaps it is simply development, but I believe it is a combination of a reduction in medicine, her vision improving, and her hearing aids being turned up. She has undergone a lot of change in the past few months and now that her seizures are under control (thank god!!!!!) we can focus on her daily activities and get more PT and OT work in through out the day.
Anya has started preschool at Pilgrim Lutheran in Enatai a stone's throw form my parents (yes this was by design). She is happy being back in a steady routine and her Pre-K class seems to be the right fit for her. Elin and I get to spend some alone time together during Anya's mornings away and we either go home so she can take a nap, run errands, or have appointments. It has been lovely.
Other exciting news is our upcoming trip to Hawaii. We had planned a trip last March but had to cancel because Elin's seizures started one week prior to our vacation. So we were fortunate enough to be able to reschedule and we are headed off for two weeks in the middle of October. I can't express how much we all NEED this vacation and how insanely excited we are to be able to go for 2 whole weeks. Our first week there we are meeting our friends from Australia with their son Harry and the second week the Piskels (the Northshore house owners and our good friends) come with their daughter Lucy. So Anya will have two weeks with two of her closest friends and so will we. It will be amazing.
The week of testing is officially over. She slept for her EEG, she slept for her BAER and she didn't have any seizures under sedation and her eye surgery was a success (so far). It was an early morning to make to Children's by 6:30 am to check in for surgery. Everything went smoothly, she was sedated successfully without incident and the surgery itself took about 45 minutes. We were able to leave by 11 with a tired but calm baby. Here eyes are red on the inside corners and will stay that way for two weeks or so as they gradually heal. Our ophthalmologist likened it to a bruise that takes time to heal. She was cranky and uncomfortable the remainder of the day on Thursday but it was nothing a little Motrin and some good naps couldn't help. Her eyes look amazing! It was surreal to have her open her eyes and look up at me for the first time after she came out of surgery. It was like looking at another baby almost. We are hoping that this one surgery does the trick. 80% of the time one surgery is all it takes to adjust the problem. BUT kids with multiple disabilities are at an increased risk for multiple surgeries. At about the 6 week post-op mark we will have a pretty good idea whether she will be good to go or might need additional surgery down the road. Right now we are happy the surgery worked as far as we can tell and it went very smooth.
The following day Elin had her BAER hearing test. I successfully sleep deprived her and she slept for the hour and half they needed to get the results. This is an amazing feat considering the girl wakes up when I walk down the hall most the time and the audiologist was messing with ear buds in her ears and loud sounds were being played. Unfortunately the results were less then stellar. Elin's hearing loss has progressed- (meaning it got worse) in both ears. We aren't ruling out the possibility of fluid in her inner ear causing some of the drop but we aren't sure if that is the cause. This is another blow to us. We really thought Elin's hearing was the same if not better then originally predicted given her uncanny ability to hear everything when her aids are out. I guess she really does tap into those other senses more then we can fathom. At this point we are applying for candidacy for a cochlear implant. We don't know if her hearing loss is severe enough yet but if it continues to drop we will be looking at options beyond hearing aids to assist her.
This week we had our last visit from our speech and hearing specialist through Listen and Talk- Rebecca. She has been with us since Elin was first diagnosed with hearing loss and we will miss her. We have a new speech pathologist thought and she seems to be just good with Elin and equally educated so we are being transferred to good hands. Also our physical therapist had her baby and we are being assigned a new PT this week. Lots of change to deal with and it's tough since we have gotten to know these people quite intimately over the last 6-9 months.
I spoke to the neuro geneticist today and we are moving ahead with a SNP array genetic test. I would try to explain it but it is super confusing and complicated. Basically we can have three results- one tells us her genes look normal, one tells us there is definitely a gene abnormality and it is most likely the cause of her issues, or there are a few small abnormalities and Myles and I get tested to see if we have them too or if they are unique to Elin indicating they might be the cause of her issues. We have to get insurance pre-approval which can be tricky for genetic testing and then move forward. Most likely we won't have any answers for at lease two months.
During our week of interminable testing Anya was happily attending ballet camp for four hours every morning. She had a wonderful time and loves to show off her pirouettes and arabesques to anyone that asks. She got to wear a pink leotard, pink tights, pink ballet shoes and a tutu everyday. The theme was Cinderella and they danced, did art projects, and got to watch ballet videos. I swear it was her dream come true.
Elin turned 1 and the flood gates of testing burst- poor girl. She spent her birthday day at Children's too in a hearing loss clinic. Here's the update:
During the hearing loss clinic we attempted another behavioral hearing test and Elin couldn't do it yet. Again- going into the clinic I knew they were going to attempt the test and was 99% sure she wouldn't be ready to be conditioned. She just isn't developmentally ready for it yet. It didn't help that she was 2 hours past her normal nap time, sleepy, cranky and hungry. Needless to say it was over quickly and we move onto a non-sedated BAER this week.
I met with the geneticist again and found out what tests had been completed. I was interested to find out what tests we would be attempting next. Unfortunately there seemed to be some sort of miscommunication within the genetics department and I am still waiting for that answer. Hopefully we will be delving more into the neurogenetic realm now since we have eliminated many "normal" causes of genetic hearing loss.
Elin had her 1 year check up with our pediatrician and had two shots last Friday. This was the same day we had her little birthday party with the grandparents. She was a mess from the shots and didn't make a very happy birthday girl . That's what I get for having her party the same day I guess. She got a good nights sleep and was back to normal the next day.
Onto this week. We had a pre-op appointment with her ophthalmologist on Monday and her eye surgery is scheduled for Thursday. We have to be at Children's at 6:30am which is good since Elin can't eat anything in the morning. It should be a quick surgery with her out of the hospital mid day. The surgery itself is very routine and shouldn't cause much discomfort afterward. It is the sedation part that makes everyone nervous. Please send all your positive mojo our direction this week- we need happy healthy thoughts for a speedy operation and quick return to normalcy.
Today- we went to Children's and Elin had an EEG. This was at 8am which was a terrific time because she needed to fall asleep for it. I was skeptical about her really being able to sleep on command but she cried so hard when they attached all the stuff to her head that she passed out on me and the test went perfectly. We will get the results later and I will pass on the news at that time. At least I know they captured a good chunk of her brain activity while she was asleep which is exactly what they were looking for.
Finally- on Friday this week Elin has a non-sedated BAER (brainstem auditory evoked response). I tried to orchestrate the BAER test while she is sedated for the eye surgery but it was too last minute and an Audiologist is not available. Major bummer. This is the same test she had when she was 2 months old and her hearing has not been tested since. The kicker is she has to sleep for it. If memory serves- she had to return for 3 visits to get the whole data set AS AN INFANT because she wouldn't sleep long enough. Our goal (which is lofty and almost asinine) is to have her fall asleep at 1 on Friday for an hour and a half and test her the entire time. Hmmmm- we shall see how this goes.
So I can't wait until this week is over and hopefully we will be a few steps closer to a better picture inside her sweet little head.
Well we made it. One year ago Elin joined our family and changed our three lives in such a miraculous way. During her first year she has touched so many hearts. In some respects it feels like the longest year of my life and at other times it feels as if I just delivered her days ago. All I can say is that our lives are blessed and so much richer with the addition of our youngest daughter. We have a journey ahead and so many milestones to reach for; the future is limitless. We love you Elin- more than you will ever know! Happy Birthday sweet baby!
Last week we reached the number 13. 13 seizures counting her first day of 5. That's a lot of action for such a short time. We have called 911 almost every time so we are quite friendly with our local fire department now. Just yesterday Elin and I had another visit with Neurology. I had a lot of questions and was starting to feel like Children's wasn't doing enough to control her seizures and assist us in finding some reason behind her condition. After her appointment I feel much more supported and like we have a new plan to follow in regards to her seizures and research linking her multiple issues together.
Our Neurologist believes Elin has some underlying syndrome (yet to be discovered) that will tie all or most of her medical issues together. It would be nice to have a name for it and a possible prognosis but we are still trying to figure that part out.
Our plan now is trying to capture some more info via EEG and also to change up her meds again. We started Lamictal about a month ago and added it slowly. It seemed as we progressively increased her dose her seizures became more frequent. With Lamictal there is a possible side effect of rash and Elin has had a rash off and on for two weeks. We think it is heat rash and not a medicine induced rash but we are abandoning Lamictal at this point. She remains on KEPPRA and we are adding Topamax. The side effects of this drug are general sedation, loss of motor control, and other icky stuff. So not the best in terms of side effects but hopefully it will help control her seizures a bit more. We have to add this medication slowly so it will take a while to see the effect.
Elin is having two types of seizures. One basically she doesn't come out and is precipitated by vomiting and the other she can snap out of but she usually stops breathing during the seizure. We use Diastat (a form of Valium) to stop the ones that she can't snap out of herself. Every time she has one it is scary and horrible. We are constantly on edge and anxious. They usually happen in the evening and are more likely when she is tired. We have added an extra dose of KEPPRA mid day in hopes of branching the meds in the middle of the day but she still had two last week after having her mid day KEPPRA dose. She remains unpredictable as always.
We are hoping to get her eyes fixed soon. The actual condition is called Esotropia Strabismus (that's fancy for eyes crossing) for all you Fancy Nancy fans. We need her to be a bit more stable so everyone feels more comfortable sedating her for the procedure. I'm really hoping the new medicine can balance her out a bit. We had a feeding specialist out this week to watch Elin eat. She eats like a champ- but it has to be pureed. She gave us some tricks to start using to get Elin to work her tongue side to side and encourage lateral movement and eventual chewing. She chokes on anything that is bite size- even melt-able puffs. The specialist informed me of a little mantra they say in the "eating instructor" world- "it starts in the hips and moves to the lips". Basically when Elin develops better gross motor control her chewing and swallowing will follow suit. UP HILL BATTLE - why not?
On to more positive news- she is rolling from her front to back without any help now. Great for development but not so much for sleeping. She falls asleep much easier on her stomach but now with her new found skill she can flip over and play on her back in her crib to her hearts content. Glorious! Sitting is coming along nicely. We can actually let go of her and she sits on her own for a few seconds before toppling over. She is finding her abdominal muscles and using them finally. Shoulder strength is still an issue we are working on. She doesn't like pushing through her arms and that skill is super important for weight shift and eventually crawling and pulling up. She is using the M sound more often and signs more and all done and has her own sign requesting Itsy Bitsy spider. She knows who mama and dada are and can track back and forth between us when we ask her to find us. She still lights up when Anya comes around and pays attention to her. Anya has started reading books to Elin which both girls benefit from greatly. Anya doesn't read per se but she has several books she can recite so they are great for sister reading time.
We try our best to maintain our normal lives as much as we can. Despite Elin's somewhat erratic seizure behavior we still trucked up to the Hood Canal cabin for the fourth of July. It is always a tough call but we want to live our lives as best we can and create positive family memories for Anya too. Finding balance in every sense of the word is our biggest challenge right now.
This blog is primarily to document Elin's life. However, I believe I need to spend at least one entire post updating everyone about Anya.
She turned 4 this past week. Anya is a ray of sunshine and full of all sorts of energy. She is bright, empathetic, athletic, enthusiastic, and kind. She is a true Gemini in every sense. She can easily transition between pretend play as a princess to acting out scenes from the Lion King. She will run away from flies but cuddle slugs and caterpillars. Her attitude can be amazingly compliant or frustratingly contrary. One thing is for certain- she is having a childhood full of adventure and filled with love.
Nearly a year ago Anya became a big sister. In this new role she has impressed me more than in any other aspect of her life. She shares willingly with her sister and genuinely loves Elin with her whole heart. Elin lights up when Anya comes around to give her a hug or play with her. They will be so good for each other.
As we have struggled with some pretty scary scenarios in our house, Anya has bravely watched on and quietly entertained herself when we needed to focus all our attention on Elin. She befriends the firefighters and medics that come to our home and helps to lighten the somber mood on occasion. I am so proud of her.
She celebrated her fourth birthday up at the cabin in Hood Canal with her family. She also had a joint birthday party with her friend Charlie at Seattle Gymnastics Academy. It was a great birthday week.
How is it possible to leave our appointments with more questions than answers every single time? This week Elin had a behavioral hearing test. It is the type of test where you sit in a sound proof room and they condition the child to look at a toy when he/she hears a sound. It usually works with babies that are at a developmental age of 9 months Elin isn't there yet and knew that going into the test but it was still worth a try. It didn't work and even though I knew she wouldn't be able to do it, the fact she couldn't still felt like a slap across the face. When she was in the hospital they told us her myelin sheathing was at about a 3-4 month level. This means when she was 7 nearly 8 months old her developmental level was closer to a 4 month old. Now- watching her progress with her language and motor skills it all makes sense and she is about 4 months behind.
The importance of the behavioral hearing test is to measure Elin's perceived sound. These results are usually different from the BAER test results and give us a better idea of what Elin can actually hear. But we can't get the results of this test until Elin is developmentally ready to be conditioned to take the test. We have a hearing loss clinic follow up on Elin's birthday in late July and we will attempt the behavioral test again. If she still can't do it- we might have to sedate her and get a BAER result again so we can monitor her hearing loss. An
interesting question was raised during this process however. Since the only hearing tests we have been able to do with Elin are brain stem testing does her partial agenesis of her corpus collosum have any interference in the results. The answer is.... wait for it...... they DON"T know. So we told the audiologist that Elin seems to hear us fairly well without her hearing aids in. I cited some examples like- she always knows when we enter her room, she wakes up every morning with Myles (crazy early), Anya often wakes her up without creating too much racket, she understands what I tell her in the bath tub, etc. Given our observations, and the uncertainty that her hearing test are totally accurate, the audiologist "turned down" her hearing aids a little.
I have my fingers crossed that when Elin can take the behavioral hearing test we find out what her levels of hearing loss actually are and I so hope she can do it on her birthday.
The other appointment we had this week was with the ophthalmologist He checks her eyes every 6 weeks or so to make sure they aren't weakening from the crossing issue. Last time all was fine, but this time he thinks her right eye is getting a bit "lazy" and letting her left eye become dominant. That's right folks- we are back to patching lefty to make righty stronger. This time Elin is older and lets us know she doesn't like her eye being patched. So much so she ripped the patch right off today (which is no small feet for her given her motor control issues). So this may be a long 6 weeks ahead of us.
The ophthalmologist is being cautious and prefers to do the eye surgery to correct the crossing while Elin has to be sedated for any other procedures We had the green light on "no sedation necessary" from the neurologists and geneticists but now with the possibility of having to sedate her for a hearing test after she is 1 we will wait. He assures me that the crossing is not in fact adding to delay of her motor skills nor will it worsen with time. So we wait again and hopefully she can be developmentally ready and take the behavioral hearing test and we can skip the sedated hearing test altogether. If that's the case then we will move forward with Elin's eye surgery at that time. If not, we will try to coordinate the two procedures so she will only have to be sedated once. Phew- that's a lot of stuff for one week.
PT is going well. Elin's sitting is coming along but her tummy time still poses a problem. She doesn't want to be up on her elbows which is the only way you can really roll over your arm. She tries her darnedest to roll over her arms flayed back and at her side. One of these days, pure will is going to hoist her over that arm and she will just roll over the "wrong" way.
Elin had a high fever for nearly week and I took her to the doctor because she didn't have any accompanying symptoms Sure enough after the doctor visit, Elin's fever broke and she broke out in a rash. Roseola- same thing Anya had when she was 9 months old. Oh yeah- Anya had a febrile seizure when she had her bout with Roseola so perhaps Elin's anti seizure meds helped her avoid that scary seizure.
When the weather was nice we all had some lovely days outside. Elin took to sitting in the lady bug chair and napping under the sun umbrella. She also had a lot of time with family enjoying the outdoors.
We've been handed a few lemons this year BUT with a baby as sweet as Elin we can only make lemonade. She is such a love- I can't even explain. You really have to experience her to understand. She is so generous in her joy it is infectious. When you hold Elin and she looks into your eyes, you know she is connecting with you. I can't express how special her gummy grin makes me feel. We are the lucky ones and I know it every time I hold my baby girl. Whatever lemons this universe has in store for us down the road cannot possibly sour my love for her. I'm a goner and she has a firm grasp on my heart.
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.
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