Brooklyn's CP Blog

We are doing great!!!

admin — Thu, 30 Aug 2007 02:04:36 +0000

I am sorry it has been so long since I have posted an update. I will try to remember the “major” things since the last posting. Brooklyn’s 4 point crawling continues to get better and better - she is all over the house now. She is pulling herself up on furniture and is cruising along furniture also. We were able to borrow a walker from a friend of mine the last weekend in July - boy did she LOVE that. We could not let her see it because that was all she wanted to do. She finally got her own walker about 2 weeks ago. She is really all over the house now. She has the biggest smile when she is up and walking - it is great to see. We have also had her in speech therapy this summer. She is doing really well with that also. She is saying hi, bye, mommy, daddy, ya and no. She will also tell you what the cow says - when she wants to. She is able to point to her ears, her nose (sometimes) and her mouth (sometimes). She can point to her socks, shirt and hair.

I am so excited by everything she is doing. Her therapists her are very pleased with her progress and believe that if we hadn’t gone to china - she wouldn’t be as far as she is now. She is doing very well at therapy - the continue to work on walking, cruising between pieces of furniture, crawling and pulling to standing. They think she will walk independently at some point, but we don’t know how long it will be til she gets there. She will continue her 5 therapies a week through our medical insurance and are hoping to get two days a week through the school. It keeps me busy but the more we can do for her the better!!! She is usually a happy little girl but she has her moments (usually at home when no one else is around). She always has a smile for everyone and her curly hair is getting long!!!

Sydney will be starting school on the 12th and will be taking ballet and gymnastics classes. She is such a great big sister to brooklyn and such a trooper going to all of her sisters therapies. I couldn’t ask for a better kid - she is such a good helper!!!!

I miss everyone from china - the medical staff and everyone I met there. It truly was an experience of a lifetime and I would do it again in an instant. I am so glad we went and that I was able to convince Scott to go. I hope that one day people will have the ability to try this treatment here to help make their lives a little better - a little more manageable - a little more “normal” (whatever that is).

I will try to keep this updated better in the future.

Heather

One month after leaving the hospital

admin — Sat, 14 Jul 2007 01:18:24 +0000

Wow - I can’t believe that it has been one month since we left the hospital - time flies when you are running around like a mad woman! Upon our return everyone was pleased with what they saw in comparison to how she was when we left. I am not sure if I mentioned it before but brooklyn’s fine motor skills have blown us away. She didn’t have much of them before we left and they didn’t do much therapy - really none - while in china. She is pointing now with one finger and folds her other fingers up while doing so. She is using a pincher grasp all of the time and is able to pick up small things with little problems. She just started occupational therapy a week ago this past monday and she is at about a 16 month level on most fine motor skills but a little lower, 14 months, with things that are more visually oriented.

Her physical therapists here are amazed at the progress she is making. She has PT monday afternoons and then has OT immediately following that. During OT the therapist put her down and she was in four point and crawled - we couldn’t believe it. The therapist worked with her on that during PT but she fought her the whole time. This Wednesday she did it again by herself. She is starting to get herself into 4 point to crawl now - not the army crawling and if she falls and starts army crawling if you tell her get up - she will usually get into 4 point and go again. We just need to get the pattern down a little better. Right now she is moving her arms and then moving one leg and then the other - but the fact that she is isolating those legs and moving them independently is HUGE!!!!! Today her therapist told me they were so excited when we left Wednesday - they can’t wait to see what she is going to do in the next few months. She is really wanting to get up and walk and is doing a good job of pulling herself up into standing with minimal help! I am amazed at what she is doing and the motivation she has will get her much further!!! We have gotten the walker ordered for her and I am not sure when it will arrive; I am worried that she will be all over the place once she gets that thing.

She is also trying to figure out how to cruise on the furniture - a little patterning and she should be good to go the way she has been moving. They are very encouraged at her therapy with everything that is happening. The director of the clinic even stuck his head in and said she is doing really well!!!

Sydney has been great with her - wanting to help her get up to stand holding onto something but of course it usually winds up with two girls crying as I am washing the shampoo out of my hair. She really loves her sister and can’t wait for her to get up and around.

Brooklyn is also in speech therapy now. We have noticed she is saying up and something that sounds like yes! I am hoping the speech thing would move along as fast as the therapy but I don’t see that happening. It would alleviate some frustration if she could tell me things - and let me tell you by the end of the day we have both had our share of frustration.

I should get going - I wanted to let you all know how wonderful she is doing!!!! Thanks for everything - it has meant the world to us!!!!

Love - the hall’s - heather, scott, sydney and brooklyn

Finally home

admin — Wed, 20 Jun 2007 18:45:05 +0000

I haven’t had time to get on the computer and let you all know we got home. Of course the trip was not without event but I don’t have time to get into that right now. So far those that have seen her have noticed a difference. Her physical therapist also noticed improvements in her as did her physiatrist but he doesn’t know that we went to china as he didn’t have anything nice to say about it. We are still not adjusted to the time change yet - I hope it will be soon. I will put a longer explanation of our trip when I have time again.

Coming home soon

admin — Fri, 15 Jun 2007 13:49:25 +0000

It is Friday night and all of the kids are sleeping here at the Wilson’s. I am about 95% packed and not looking forward to the flight home on Sunday. I am hoping that Brooklyn will at least spend some time in her carseat and sleep maybe a little this time during the flight. I have been doing some last minute errands around Shanghai and will be spending the day with my sister in law tomorrow for one more day around Shanghai. The weather here has not been so great, unlike at home. Brooklyn will start physical therapy on the Monday after we get home and then will begin speech therapy the following Wednesday. She will have PT three times per week and speech once a week. I am not sure what is going on with the funding for special education so I guess I will have to see if that will impact the services she would receive in the fall.

There will actually be some things I will miss about china: the cheap food, the cheap clothes, the beautiful landscape, the convenience of being able to walk/ride your bike to places, Mary and Mr. Lu, and being able to spend time with my niece and nephew. There are some things that I will not miss about china: lack of personal space, everyone wanting to touch Brooklyn, the public bathrooms (which I have tried to avoid), babies butts and other things sticking out of the crotchless pants (if you need an explanation email me), language barrier (that is my fault though), and no Dr. pepper to drink.

This has definitely been a journey and I hope I can make a wonderful scrapbook for Brooklyn to have to tell her about our journey and everyone that has helped us. If you would like to send Brooklyn a special wish for me to include in her scrapbook please email it to me or you can also mail it to me - if you need our address let me know or one of our family members know and we will get it to you; you may also send a picture to me to put with your note. I want Brooklyn to know how many people helped make this journey possible and how many people out there care about her. I know she won’t remember any of this trip but I hope one day she will understand what this all meant for her. I hope this will open many opportunities to her and will minimize her physical limitations so that one day she will be able to walk unassisted.

We will be leaving on Sunday morning (Saturday night in the US) and will be arriving Sunday afternoon in Detroit. Please pray that we have a safe flight and that things go smoothly for us. I hope to see all of you soon and I can’t thank you all enough for the support and encouragement you have given our family even when I was in the hospital before Brooklyn was born, through her hospital stay and everything else we have endured. She is one tough little girl with an attitude and I hope that will get her very far in life!!

So long from China - see you all soon in the States!!!!

LOVE - Heather & Brooklyn

Our last night in Hang Zhou

admin — Tue, 12 Jun 2007 12:24:41 +0000

I can’t believe that it is our last night here - what an emotional rollercoaster today has been. Three families left today - I was wrong about lawrence of romania leaving on Wednesday. It was very hard to say good-bye to them all and yet it was Brooklyn’s last day of therapy and Dr.Mike is very pleased with her progress. I have gotten used to china, the hospital and the staff here - it has become a home away from home. As I have said a thousand times, everyone here has been so nice and helpful and they all love Brooklyn (I know - who can blame them). I am very grateful to have had this experience and wouldn’t trade anything for it. As much as i have missed being away from my family, I will miss everyone I have met here in china that has helped me through this journey. I know there are many of you that have been praying for us and checking up on us daily and we thank you more then we can express. it is nice to know that in this crazy world there are people out there who still care about others and put the needs of others before their own - I wish there could be more of that in this world! My in laws here in China have been very helpful and this trip would have been a greater challenge without them and we can’t thank them enough. There are so many people that have helped in so many ways it would be impossible to name everyone, but if you are reading this - we thank you because it means you care enough to check up on us!!!

I know it will be another rollercoaster tomorrow having to say good-bye to everyone that took such great care of Brooklyn and I, for that matter. If you ever have the chance to visit china I would highly recommend it. When my in laws moved here I told them I would never come visit but I am glad we got to see this country.

The longer I write the more I cry, so I think I will stop now. I will continue to keep updating the blog with news of Brooklyn’s progess - so keep checking back!!!!

I will try to post once more before we leave Sunday morning, so until then…………………………..

Love - Heather & Brooklyn

One more day of therapy

admin — Mon, 11 Jun 2007 13:27:25 +0000

I can’t believe that Brooklyn on has one more day of therapy and then we will be leaving the hospital. We will be staying in Shanghai with the wilson’s yet again. Sunday we will be heading home at 10am china time and will arrive on Sunday 1:40 pm detroit time and then monday it is back to business with brooklyn starting therapy again.

Tonight a group of us went out to dinner as many of us will be leaving in the next few days. There were several patients/families that have been here the majority of the time that we have and we wanted to get together before we started departing. We had a great dinner at Pizza hut - I know we are in china but it is just easier for those that have kids. Tomorrow the scottish boys will be leaving and I will be sad to see them leave. I can’t tell you how much help they have been to Brooklyn and I, especially Jeff. He has accompanied us on trips to the market, shopping excursions or just walks around town. He and brooklyn have bonded and she always has a smile for him. It will be hard to say good-bye and I could never repay him for the help he has provided when I have been here alone. I wish both Jeff and Brian all the best and hope Brian continues to see improvements. I hope we can keep in touch wtih them - you never know when you might want to pop in to visit them. Joanne is leaving tomorrow also with her son Jeremy who is here for treatment and her 2 year old daughter Hannah. Hannah loves to play with “baby brooklyn” and brooke lights up when she hears hannah’s shoes - they squeak. Hannah has helped me distract brooke during some of her treatments and i am very grateful for that. On Wednesday Lawrence from Romania and his daughter Laura are leaving. Lawrence has provided the comic relief while we have been here and he is a great father to Laura - he has been here by himself the whole time. The people I have met here are amazing and I am so glad I got to meet them.

I received word that my canadian friends made it home safe and sound and I am looking forward to keeping in touch with them. I have also met a mother and her son from canada - this is their second trip to china for stem cells but this is the first time at this hospital. Dylan also has cerebral palsy - he is so cute. Too bad Dylan, Christopher and Brooklyn couldn’t have all been here at the same time - I think they would’ve had fun.

It is getting late and I can’t shake this cold so I should get going. I can’t believe we have almost completed the medical part of our journey. I know I will have more to say tomorrow on my final night here.

sunday

admin — Sun, 10 Jun 2007 09:12:09 +0000

We went to the silk market this morning with some people from pennsylvania that have yet to really venture out. I think by the end of the Mandy had become addicted to bargaining. I think she will do fine here - she is here with her son who was injured in a car accident and a friend of hers, Susan. They will be here til the 1st of July. Another patient arrived Friday night and there is another child due to arrive from canada today. They have had treatment before but at a different hospital. I have started to go through my food and am giving some things away to those that have just arrived. I don’t think I will have too much to pack to get back to shanghai.

Scott and syd arrived home safely with no incidents this time. I think Brooke is hungry so I need to get going for now.

Hope all is well - love heather & brooke

Saturday

admin — Sat, 09 Jun 2007 08:03:44 +0000

Not much going on here today, Brooklyn does not have any therapy this weekend. Went back to the traditional market and to the local market this morning. Didn’t really buy anything. It is warm here today and sticky. I am trying to find a way to pass the time until dinner and then til bed time. I am not sure what we are going to do tomorrow. I can’t sit here all day - it is too boring. I guess we will figure something out.

Our friends from canada left today - it was so sad to see t hem leave. I know we will keep in touch and will hopefully see them in the future since they are so close. Brooklyn is trying to get to the other computer so i must run. Scott and Syd made it to Tokyo without any problems - hopefully the rest of their journey will be good.

Finished another week of treatment

admin — Fri, 08 Jun 2007 13:50:12 +0000

Brooklyn finished another week of therapy and only has two days left. As I posted earlier we are leaving the hospital two days earlier for logistic reasons. She will have her last therapy Tuesday morning. She is back to her all therapy in the morning schedule - thank god. She does much better at therapy and napping when it is all in the am. She had two hours of therapy this afternoon and didn’t make it very far walking, but yesterday she made it all the way around the floor and wanted to do more. We are planning on the hitting the traditional market tomorrow and the local market. I have checked the internet to see if there are any sights I have not seen but I have hit all of the recommended ones in hangzhou.

Scott and syd leave tomorrow and are hoping for no unexpected stops this time. I am sure they will be fine and I hope they will adjust to the time change before I get back. I am not sure how brooke and I are going to do - it took her a week coming over - I hope it doesn’t take that long when we get home. I could be one tired puppy if that is the case.

I am trying to gear up for coming home and getting back to my crazy schedule. We have brooke set up for speech therapy and are waiting to see when they can get her in for PT. It looks like Wednesday will be a therapy day this summer.

Syd will be going to school 4 days a week in September in the morning - that should be fun trying to get everyone up, fed and out the door and to school by 8:30. I am not looking forward to that!!! I can’t believe it will be half through June when I get home. i think the summer will fly by!

The weather is hot here again - in the upper 80s, low 90s. I should get to bed - i am getting a cold - don’t know how, but I am getting one and don’t want brooke to be sick.

until tomorrow - love heather & brooklyn

another day of therapy

admin — Fri, 08 Jun 2007 01:56:37 +0000

Sorry for the short info on her treatment - time crunch. I have about 10 minutes before she starts therapy. Her last treatment went ok - they had to stick her 3 times to get her IV started. That was not fun at all - I made Scott stay and do that. I had to suffer through the blood draw which was about that bad. Dr. Mike ended up carrying her back to the room as she was crying. She slept pretty well after that and through the night. We didn’t do anything yesterday except therapy. They are so busy with the floor being full now and therapy is usually running behind - yesteray it was 1/2 hour.

We have tomorrow and sunday free - not sure what we will do - trying to figure that out. Scott and Syd head back home tomorrow. I hope their trip back is uneventful and safe. Not much more to say - our canadian friends leave tomorrow so we are going out to dinner tonight. I know brooke will miss christopher, but they live in toronto so it is not that far.

Gotta run - love Heather & Brooklyn