It has been a while

It has been a while. Which is a good thing. But now I need this blog again. I am feeling so overwhelmed and worried for Heather. As some of you know she has had a chronic cough for a very very long time. We have been through a few Drs and a lot of medicines and havent gotten any results. Today we saw a new pulminologist at Children's. He sent her down for some x rays before our appointment. I knew something wasn't right the second I saw the x ray on the screen. I could clearly see one lung looking like it should and the other looked like half was missing. The Dr pointed out that the bottom is partially collapsed and the top part of both lungs was swollen, meaning she struggles to get the air back out after breathing it in. Her lungs had webs of thick mucous. He said none of this has to do with her being sick right now, this has all been going on. He said without a doubt she has asthma, but it doesn't end there. He said she is aspirating her saliva and post nasal drip into her lungs. He said he is concerned there might be an immune disorder causing this or it could be(not likely) cystic fibrosis. We spent over 3 hours in his office talking. He said he is concerned and wants this taken care of. She had blood taken(about 10 viles!!) to check her immune response. He booked her for a cystic fibrosis and breathing test tomorrow in Boston. He said if those show nothing the next step is a CT scan and a surgery where he can go in and look right inside her lungs.

So we left with 5 new prescriptions including one for a high dose of prednisone. I am so worried and feel so bad that this has gone this long.

Recent Pictures

Just wanted to share some recent pictures!

October 2008

Thought I would throw out a brief update even though I doubt anyone checks this still. Heather is doing great. She is loving preschool(she is going 3 half days). She is still on her IEP and getting her therapy through the town. She never stops moving and still has the best little personality. In September she became a big sister and she is totally in love with her baby sister.

Dusting off Miss Heather's blog

Wow has it been a long time. I am doubtful anyone still pops by, but thought I would update anyhow!

Heather continues with services through our town and is doing awesome. Her PT has helped tremendously. She can now climb stairs like a pro, can run, hop and throw a ball. She is working on pedaling a bike still and balance but has come such a long way! She goes to preschool one morning a week and absolutely loves it. She asks everyday if it is her school day. Her teacher also comes to our house one morning a week to work with Heather which Heather really likes. She will be sad to see it end in a few weeks for summer break.

Heather is also going to be a big sister this September. She is very excited and can not wait for her little sister to get here!

Evaluation Meeting

Over the last couple of months, Heather was evaluated by our town's special ed dept. She was evaluated by their preschool coordinator(special ed), the town's Ot, Pt, speech therapist and also education consultant.

This morning I went to Heather's evaluation meeting. It was with the preschool coordinator(special ed), the town's Ot, Pt, speech therapist and also education consultant. They decided to put Heather on an IEP based on her delays. She will receive PT through them to build up strength and work on endurance. They were concerned with how difficult things are for her to do physically and how tired she got quickly. The PT told me this is from the hypotonia, which she said is neurological and will always be present, but by helping her build strength and endurance, it will be easier for her to cope. They are figuring out what is best for speech, so we will find out more with that in August.

Heather is still seeing the private OT 2 mornings a week and will be starting there with a new speech therapist as well. They want to keep working on her oral motor skills and low muscle tone in her mouth.

Heather is 3!

Heather celebrated her 3rd birthday yesterday. She had a great day. She had occupational therapy in the morning and her OT baked her cupcakes and brought them in. So sweet. After dinner we had a small party and she was beyond excited for cake.



Happy because everyone was singing Happy Birthday to her


opening a gift


testing out her new big girl bed(that she decided not to sleep in)



I also took a few pictures yesterday while she was at Occupational therapy.

Heather is inside this swing. It works the vestibular system. It isn't her favorite thing, but she is getting more tolerant of it!




riding on the "scooter"


Working my muscles in the ball pit

January 2007

I can not believe that Heather is going to be 3 next month. She is getting so big and I enjoy every minute with her. She is still getting Occupational therapy 3 mornings a week at OTA. She is thriving there and we are seeing big improvements in her overall. Her speech is improving also. She still has some articulation issues, but can express what she wants and when with no problems! Her therapists have suggested that I hold off on sending her to preschool next year. They feel that she would have problems coping even in the special ed class she would be in. So it looks like I will have another year home with her.

She is getting excited for her birthday and keeps saying she is having a Minnie Mouse cake. She says she wants a big girl bed for her gift. I'm not convinced that it is a good idea, but we will see.

I will leave you with a few pictures and the promise to update more often!

Queen Minnie Mouse


Heather last month-Fifth's Disease and feeling lousy



Blowing bubbles as part of her oral therapy at home