Birthday Weekend - Chloe turns 1!

Chloe celebrated her 1st birthday today! We celebrated her birthday at a nice restaurant on Long Island not too far from Michelle's parents house. Chloe was surrounded by family and close friends. My parents and godmother flew in from Canada and one of my aunt's flew in from St. Louis to join in the festivities. They were all very surprised and pleased to see how far she has progressed. My mother last visited when Chloe first took ill. So for my mother to see her progress from being intubated to now sitting upright in her wheelchair wide awake is a true miracle.

While I write this blog Chloe sits in front of me. Looking at her beautiful face I think back to how difficult and trying this past year has been for her and for our family. She's one now and while I am overjoyed to celebrate this miraculous day, at the same time I remain a little sad. She brings in her first year of life unlike anything Michelle and I, or any parent for that matter could envision for their child. It was a year filled with very joyous moments such as her birth, her first smile and laugh, wonderful times spent with Olivia, many happy trips to Long Island spent with her grandparents, aunts and uncles. Then at almost 8 months old her life and ours took a very unexpected and difficult turn.

Four months have passed since that fateful day. And in that time we have experienced the whole gamut of emotions including sadness, anger and melancholy. Since returning home from her hospital stay, we have been given a second chance to experience many firsts again. We celebrated her first taste of food, trips out to to her grandparents and most recently her first smile. Since recovering from her meningitis, everything has returned to some extent, she now lifts her head little by little, she can almost turn herself over onto her tummy, her eyes are wide and bright again. But, her smile evaded us - or it was always there, just buried under the neurons constantly firing within her brain trying to sort themselves out and find some sense of direction. Chloe's smile and laugh were intoxicating, she could easily make everyone stop and take notice. Her smile had a way of making everything better. For the longest time we waited to see her smile again. Of all things, not seeing her smile was among the worst of feelings we had to endure. So to see her smile again has been the most wonderful sight to see. It's sort of a cross between a smirk and sneer. I've never seen anything so beautiful.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

Difficult results

Last Tuesday, Chloe and I went to Blythedale to have her hearing test. She was sedated for the test so that the doctor could monitor her brain activity and really see how her ears were functioning and processing sounds at different frequencies.

Chloe’s hearing has been a mystery to us as sometimes we have thought that she has responded to sounds while other times when a loud or startling noise would be presented, she would not stir. I have always heard that when a person loses one sense, the other senses are almost hypersensitive. So when we walk into Chloe’s room and we think she wakes because she hears us, is it really that she hears our steps or that she smells our scent?

Well (deep breath), the test results came back quite abnormal. It showed that Chloe has profound loss in her left ear and mild loss in her right ear. Unfortunately, this loss is presented at a very high frequency. From what I understood from the words and charts presented, Chloe can somewhat hear an airplane or the telephone ring but at a sound that would almost present as a whisper to a normal hearing person.

We have made a second appointment with another doctor, an ENT who works through Cornell. He will be able to give Chloe a second test that will look further and check for damage to her cochlea. If these tests also show abnormalities in her ears, then we will have to move forward accordingly. Our tentative plan for now will be to have Chloe fitted for hearing aids for both ears to amplify sounds and see if this will help her to make sense of her world.

Hard news which deep down I sort of knew but kept quiet about. Almost as if I didn’t think it too much or say it out loud, then it wouldn’t come true. We move forward and Reth and I have already asked our speech therapist to begin teaching us what signs she knows and we will look into a sign language class she had suggested. Signs worked for Olivia before she could speak so we are hopeful that Chloe will be able to engage with us through this form of communication. We just need to work and find out more on her vision abilities to make sure this will make sense for her.

We will let you know as we find out more from this second test.

Much love,

Michelle, Rethier, Olivia and Chloe

IFSP meeting

It was a long weekend thinking about the meeting that took place this morning. Up until now, we have been getting services for Chloe through an interim plan. Today we sat down with a city official, our service coordinator, and an advocate from the agency we have been using and worked out a new plan for more services.

It was hard to gear myself up again to retell Chloe's journey - to talk about what life was like before and how it is now. I cried last night as I set out old pictures of Chloe before she got sick. It's so hard to create a picture of how beautiful and full of life she is so we have always displayed a series of pictures taken just weeks before her hospitalization. It's still difficult to look closely at those pictures but at the same time you find inspiration as well. I typed out highlights of her therapy so far and our goals as a family both short and long term. When I woke up, I was exhausted from tossing and turning. I worried that I wouldn't pull myself together, that I wouldn't fight as hard as I should. How could I really make them listen and hear what I am asking for - to bring Chloe back to those moments before she became sick.

I woke Chloe a little earlier this morning so I could spend some time with her before the meeting. I became so wrapped up in our play that I forgot about last minute prepping for the meeting. I only had time to gather some paperwork together.

In the end, my playtime with Chloe reminded me of what really needed to be done - I needed to be mommy and speak from my heart. I decided not to put Chloe down for a nap. I wanted her by my side during her meeting. I wanted her support. I wanted her energy. I wanted this team to see who she was, how far she has come, and how much more can be done to help her along.

The meeting was painless. The city official who came was the same one we had for our interim meeting so she already knew Chloe's story. What made this even more pleasant was that she knew what my goals have been from the beginning and I could talk to her about the progress Chloe has made in just a few weeks. She was happy to hear that therapies have made a difference and she granted our services to continue. So, we begin a new plan in the next week or so. Chloe and I will now have a routine that will include 3 PT, 2 OT, 3 Speech with feeding, 2 Vision and 2 Special Instruction sessions. We have also been given a social worker to meet with me once a week for an hour to help me get through paperwork and have a support for me as a parent. Our service coordinator has also arranged for an evaluation to be done for adaptive equipment - stroller, chair, bath chair, stander, splints, etc. We have also begun filing an application for respite services so that I can take a break once in awhile.

We are so thankful for the services that have been offered. We will meet our new team over the next few days and pray that we all form solid relationships with them.

Thank you everyone for all your comments, messages, and emails of support.

Much love,

Michelle, Reth, Olivia and Chloe

Therapy updates

Interim services for Chloe have been going really well. It has been so nice to have another team of therapists in place to help us along. Chloe has done well forming relationships with her new friends. They all come to the house so we are not asked to drive all over town for her services.

Speech and feeding come three times a week and Chloe has gotten along well with her therapist, Anastasia. She allows her to touch around her face, particularly her lips and mouth, without too much fuss. We have learned more oral stimulation exercises for Chloe and have found some success. Chloe lets us play much more with different spoons and textured toothbrushes to help wake up her mouth muscles. As a result, Chloe continues to do well with tasting some rice cereal, applesauce and applejuice. She did not regain her sucking reflex but her swallow seems to be fine and she is able to clear her mouth when we give her tiny tastes of food. Also, Chloe has been making tons of new noises and coos. She has been able to express herself with nice oohs and aahs and we are learning her new cries to let us know if she’s hungry or tired. Chloe is definitely much more playful in moving around her tongue and making different curls of her lip.

PT and OT come twice a week and they too have done great work with Chloe. Over the past couple weeks since interim services have begun we have seen Chloe’s strength continue to build. Chloe shows preference now to sitting up rather than lying on her back. We think this is also because she is able to see more and she is showing interest in her environment again. Chloe works very hard to keep her head up while we hold her trunk tightly. She does not need as much head support to keep her head from snapping forward and back; she is able to hold herself for longer periods of time. Tummy time has definitely seen much improvement. Though she still whines and cries, Chloe is able to do much more. She lifts her head up for more than a few seconds and continues to show that she can move her head from side to side so that she clears her airway. During an OT session last week, Chloe was able to hold her head up on her own and put some pressure on her elbows and hands for about a minute. While her OT held her in place, I sat in front of Chloe, cheering her on and when she looked up her eyes were so wide when she saw my face – it was so exciting! When I held up a mirror so that she could see herself, her eyes grew even wider and she seemed to calm a bit more.

Chloe also endures her sidelying position a bit more. She has started to tolerate more naps on her right and left side. Now that she shows more mobility of her head, we see that she is able to bring her head and neck up and back as if to roll over. With little nudges she is able to give herself from her left side she is able to bring about half her body over to go for a roll. Her legs sometimes lack the strength to bring themselves over but with a little help she can bring herself over and roll onto her belly. Her right arm is still a bit stiff so she has trouble moving it out from under her but we’ll get there.

Early Intervention, for those who are not familiar, is a program for infants and toddlers with disabilities and their families. Because Chloe has many needs and shows many developmental delays at this time she qualifies for different services of the state. Right now, our interim only gives us speech with feeding, PT, and OT. Our official IFSP (Individual Family Service Plan) will take place on Monday. For the past month, we have been working with different people to gather evaluations of Chloe’s delays and with their written recommendations and with my story about Chloe, we will ask that state to grant our family more services and with higher frequencies. Our hope right now it to continue speech, PT, OT and add vision therapy and special instruction. We are also hoping for respite to be granted so that I will have even a couple hours a week to myself to run errands or simply just sit and take a moment. Chloe needs all the help we can give her so that she can have the best chances of recovery so let’s hope that our city official will listen to our needs and give us the most of this program.

Keep you posted.

Much love,

Michelle, Rethier, Olivia and Chloe