Pirate patch again

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.

Making Lemonade

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.

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.

Elin the Enigma

Well well well, where do I start. How about with how much I love our youngest daughter. She is amazing in so many ways. Her smile lights up my days. There is nothing quite like her gummy grin to chase away any frowny faces in the room. She is insanely ticklish. Even when I'm just changing her onesie and gently grabbing her upper arm to pull through the sleeve she giggles and squirms. She started waving her arm up and down when she wanted "more' of any activity. We have been signing "more" with her and now she attempts to bring her hands together to sign the word. It is awesome to see her communicate. She signs more for singing, silly faces, funny noises, daddy's whistling and food of any kind. Speaking of food, she has really taken to eating her solid food. We have added several new foods to her diet this past month- she has tried sweet potato, pears, prunes, banana, avocado, peas, and oats. Her favorite foods right now are prunes and applesauce. The peas made her gag (that's my girl!).

As far as her eyesight we have a mixed review. The patching helped strengthen her right eye which was positive  The problem of her eyes crossing still persists however. We have a follow up appointment right before we leave for Hawaii and we can discuss if surgery in her future might be the next step. Please keep your fingers crossed that her brain starts to tell her eyes to straighten up before the end of March!

On to yet another challenge facing our sweetie. I have mentioned my concern about Elin's mobility (or lack there of) in past blog posts. I try not to compare Elin to Anya but it was becoming apparent to me that Elin's gross motor development was not coming along as she aged. Thankfully we have such a great support network with her Early Intervention program that we were able to quickly set up an evaluation with an agency called Kindering. Elin had a gross motor evaluation by a physical therapist this week and sure enough she qualifies for services. We are hoping to start her PT before we leave for Hawaii. Basically we need to work on her neck strength and have her spend more time on her tummy whether she likes it or not. We are hoping that all this assistance we are receiving so early in her life will help keep her on track to regular development. It is tough though-  I'm not going to lie. Officially she is supposed to spend 2 hours a day on her tummy. She usually lasts about 5 minutes before getting really upset so you can imagine how difficult this is going to be.

As for her hearing issue, she is progressing normally with language. Her vowel sounds are coming along wonderfully and we are hoping to hear more consonant sounds soon.  We spend a lot of time saying da da da and ma ma ma and ba ba ba. I attended the yearly auction and fundraiser for Elin's hearing program Listen and Talk last month. It was awesome and I felt so welcomed by the community of parents, grandparents and teachers of all these special little people. Next year I will be soliciting donations and attendance from family and friends so be ready!

So in a nutshell I spend most of my days carting Anya around and laying on the floor working with Elin in all sorts of capacities. All of our playtime has a focus and goal- it takes a bit of the fun out of it but it also forces me to slow down and spend time on the really important stuff- time with my kids!

Sun Valley

The sun was out for us during our 6 day trip to Sun Valley. I flew over with Natalie and the girls on Tuesday while the boys flew over to meet us on Thursday. Natalie and I flew into Boise, rented a car, and drove the 2  1/2 hours to Sun Valley. We had the boys fly directly in and out of Hailey since their trip was shorter. We all had a blast. My parents rented a lovely condo in Elkhorn for a month and had invited us all to come stay with them. I don't think they had expected all of us to come AT THE SAME TIME, but it worked out great for everyone. Anya and Elin got to spend some quality time with both their grandparents and their aunt and uncle. Meanwhile we got to ski- oh glorious downhill skiing at Sun Valley. It really is the best skiing around. The conditions are almost always perfect- sunny, cold and groomed. That is how I like to ski at least.

The travelling part of the vacation went very well. Both girls had colds so I was concerned about the airplane ride but the take off and descent didn't even phase them on the way over. By the time they flew home however both girls complained of ear pain- Anya by asking me to kiss her ear and telling me it hurt- Elin by screaming for 20 minutes. Myles was a brave soul and with the help of my brother flew home with Elin while Natalie and I took Anya. It worked out well for everyone and I am very proud of my husband for being able to manage a 6 month old on a plane without the mom. Kudos to him!

While in Sun Valley we were able to get Anya up on skis for the first time. She LOVED it! Myles had a great time teaching her and Bobpop took her up to Dollar mountain one day too. She got to sled and snowshoe a bit as well. Since the weather was quite cold and Elin had a cold we kept her inside most the time. She had a lovely time spending time with everyone and relaxing by the fire.


Poor Elin though- she looks like a pirate for 2-3 hours a day. After her eye appointment the doctor recommended we have her wear a patch over her strong (left) eye to strengthen her right eye. She gets frustrated by having to wear the patch but generally goes along with the torture. Taking it off is another matter. Just think of taking a band-aid off the same part of your skin every day- especially the sensitive tender skin around your eye.  We are gentle but it still pulls and hurts her.
She has been eating rice cereal and applesauce for a few weeks. We are going to start venturing into new foods now that we are home from vacation. (I didn't want to risk an allergic reaction right before we left or while we were gone). She still mushes it around in her mouth and spits it out but some of it makes it down I think. Our doctor told us it was very important for babies at 6 months to start learning to eat solid foods to get the tongue use to the swallowing motion. It helps with language development which is of course a top priority for us.

 We have been working with Elin to get her to sit up more and spend more time on her tummy. I can get about 2-3 minutes of tummy time out of her before she starts crying. She still hates it- but I am trying to persevere in order to develop her neck muscles more. She is happiest sitting on your lap or laying on her back or side interacting with you or any inanimate object with a face.

Half way to 1

6 months really? How did that happen? Elin is thriving and loving life. She laughs easily and loves being tickled, sung too, and generally entertained by anyone. Her sister is by far her favorite person and Anya gets Elin laughing by just making eye contact with her. It is the beginning of a beautiful friendship between these two sisters.

We have a couple of exciting trips planned and they are coming up quickly. In the beginning of February we are headed to Sun Valley to stay with Ahma and Bobpop in their condo for 5 days. Auntie Natalie is flying over with Anya, Elin and I and the boys (Scott and Myles) are flying over two days later. Should be quite the adventure flying with two kids and no dad- but thankfully Natalie is super helpful and hopefully she will still love her nieces by the end of the trip! Be good girls! In Sun Valley we plan to snow shoe, down hill and cross country ski, sled and generally have a ball outside. We also are hoping to get Anya up on skis for the first time on dollar mountain. Wish us luck! Rough life- first time skiing in Sun Valley.
In the end of March we all fly over to Hawaii to stay with our friends the Piskels on the North Shore of Oahu in their amazing beach home. Anya and Lucy are good friends so the trip should be a relaxing family vacation. Can't wait for some beach time.

Alright- update on Elin. She had her 6 month appointment last week and weighs 14 lbs, 4 oz putting her in the 45%. She is 25 inches long- 25% and her head is in the 55%.  She is sitting up in her Bumbo chair and gaining better control of her large noggin.  Her core muscles are coming along as well so she is getting stronger and sitting better in general. We have introduced some rice cereal which she promptly gummed, mushed and drooled out of her mouth. We will keep at it so she begins to learn how to eat some solid food. She is nursing like a champ still and also takes a bottle from anyone. Elin is an easy baby. Despite her "complications" her temperament and general attitude is chill and relaxed.
As far as hearing is concerned she is doing well.
Her speech sounds are progressing and she says ahh, ooo, eee, oh, woo, baa (rarely). Mainly she screams and hollers entertaining herself as she wiggles and kicks on the floor. She rolls from her back to her side and almost to her tummy. She is NOT a fan of tummy time mainly because it is too hard for her to lift her head off the ground for any extended period of time (think face smashed into the carpet). She loves naked time which we have come to call "nudey rudey" time at our house. Anya also partakes and we have nightly nudey rudey time with both girls. It is hilarious and I can't wait to someday embarrass them both in front of friends when I tell the story about them spending every night naked on the floor together. Elin spits up often still but it is getting better. I'm hoping with the addition of solid foods we can get more of that milk to stick in her tummy and not end up on me or her burp cloth.
We are seeing a pediatric optometrist because her eyes are not tracking all that well. We hope that it is simply a lazy eye issue which is very fixable and not a vision problem. Stay tuned for more on that.
Generally life is crazy busy and I don't know where the months are flying off too. I'm trying my best to live in the moment and soak up the baby days of Elin since I know they are fleeting.

2013 here we come

2012 was a year full of surprises that's for sure. From not knowing whether we were having a boy or a girl to finding out about Elin's hearing loss we ran the gammit of emotions. We are ushering 2013 in with hope we  will gain some balance and normalcy in our lives once again.

The holidays were crazy and wonderful. Anya was fully "invested" in Christmas this year from wanting to be good for Santa to singing all sorts of Christmas carols. We had  four nights of celebration. First Myles's family Christmas at Kyra's house, next a Santa party (complete with a real live Santa) at my parents, our annual Christmas Eve cocktail party, and Christmas dinner at Scott and Natalie's. Phew- it was a whirlwind of food, drinks and presents and both girls were a bit exhausted by the end of it. Elin handled the noise of the parties well for a while but she would get aggravated after a few hours and need a quiet break from all the din.

She is wearing her hearing aids full time now and seems to be flourishing. She started blowing raspberries about a month ago which is apparently an important skill for speech development according to our Listen and Talk counselor Rebecca. As discussed before, we have an early intervention program counselor come to our house on a weekly basis and meet with us. We go over new sounds Elin is making, new developmental milestones, she tests and checks her hearing aids and she interacts with Elin. She has given us a few good books to read to Anya about hearing loss and hearing aids and she loves to read them.

Anya has gotten to go to Elin's audiologist two times now and is a good sport during the appointments. Anya has been asking to have her hearing checked since reading the books and going to the appointments so at the most recent one we tested her hearing. Both Myles and I were pretty confident that Anya has no hearing issues but it was still a little nerve racking none the less to watch her get tested and wait for the results. She is normal and has absolutely no hearing loss or hearing issue at all. Thank God! She loved playing the games and interacting with the audiologist.

Elin is working very hard at rolling over. If she's naked she can get from her back to her side no problem. Once she gets to her tummy she isn't a fan so she really isn't all that motivated to turn all the way over. Clothes seem to be a bit of hindrance on her ability so she just rocks side to side on her back when dressed. She has found her right hand and sucks on it constantly. Anya is a thumb sucker and Elin is quickly becoming one as well. Self soothing is just fine by me. We have been blindly locating spit out binkies in the dark for several months so an attached thumb will be a welcome tool. Elin is sleeping pretty well. We are getting her down between 8-9 pm and she usually wakes once around 4 or 5 am. Then she will sleep until 8-9 am.

Elin lights up when she hears or sees Anya. I can tell already that these two are going to have a very special bond and it warms my heart to see Anya pay so much attention to her sister. She loves her and enjoys playing with her by showing her toys and making music for her. We have Elin's 6 month appointment the end of January. I can't believe she is almost 6 months old. Second kids grow up so fast.