And Life continues........

Things are going pretty well here. I took Keith in for his post op check up today and we got great news! Keith can now see the big E on the eye chart! He can also see some bright colors and can count fingers up to 4 feet away! This made me cry at the docs office today and the doc was ready to do a dance for Keith as this is the most he has seen from his eye in about 5 months! The only sad news was that he has a small cataract on his eye. We will have to watch that and see how it progresses. So the doctor said we did not have to come and see him for another check until after our trip to Boston! Yeah! Hopefully this last surgery has done the trick so we can maybe have a normal summer!
Sarah is still loving school! She loves to learn and loves to be with her friends. Unfortunatly I have realized that she has inharited her Mother's stubborn head! We but heads frequently, but we also have a great time together. She is my little artist. She can make  beautiful art from anything. She also amazes me with her ease with numbers! They come so easily to her. She gets that from Daddy. I told Fred the other day that in a few years I will not be able to help her with her math homework as she will be over my head.
Logsn is just awesome to be around. He is such a funny kid. It is hard to be mad at him as he can make you laugh even when he is being naughty! He loves to sing! We have a casio piano in the livingroom with a mic hooked up to it. When no one is in the room he will turn it on and sit and sing a song to himself. I have yet to catch him with the video camera. I need to get it ready as this will be so cute to look back on in 20 years....especially if he becomes  famous.
My husband, Fred, whom has been with me for 16 years now, is still the love of my life. Don't get me wrong...we still get on each others nerves from time to time! But I am amazed at how easy it is to talk to him and share the craziness in our lives. With everything that has been going on in our lives for the past 8 months, he has been there to help me through it! I know that I would not have been able to do it without him! My church family and some close friends have also helped me to understand that there is light at the end of this dark tunnel and we will get there. I am so blessed to have such great friends and church family and my children and husband!
So hope you liked my sappy post, as I have had such an amazing day that I could not possibly say anything negative! Tomorrow is another day though!!

February trip to Boston

At it again. We went to Burlington for a check up to see how the January surgery went....and we did not get good news. So we were sent back to Boston for another surgery. This one was much different though. We have been going down for laser and cryotherapy treatments. This time they wanted to do a vitrectomy. Which is the removal of the fluid in the eye. They stick in three needle like things into the eye to remove the cloudy fluid and they replaced it with a gas bubble and saline like fluid. The gas bubble is used to put pressure on the retina to lay flat and hopefully reaatch itself. Sarah came down with a stomach bug the morning we were supposed to go so Fred had to stay home with Her and Logan. Keith and I made this trip by ourselves....Not Fun!!! I really need my other half to hold me up!!! Keith's nerves got the better of him the morning of the surgery. I think that nerves, mixed with an empty stomach and the super hot waiting room really wreeked havoc on his system! Keith cannot lay flat on his back, run, jump, fly on an airplane, change elevations for the next 30 days! So, basically not be an 8 year old boy for 30 days. Impossible you say???? We will only find out soon enough!?!? It has been tough as we have had to do the drops 4 times a day and those of you who know Keith well know that this is not an easy task!! We did find the cocktail for anesthisia that works for him!! Only 5 surgeries before we got the right one!! We are opting to go with the intramuscular injection rather then the "yummy" sleepy juice that never seemed to work, or taste good for that matter!! So we have been in for the one week post opp visit and all seems ok. His eye pressure is in the normal range, they cannot see much due to the gas bubble but we will go back in two weeks to see how he is holding up. Hopefully if all goes well we will not have to go to Boston for 6-8 weeks! I love to visit Boston but this is getting rediculous! We are going to have to find an apartment down there if we keep this up!! Here are some new pics to ponder at! He loves to gross his Mom out as he knows how much the eye bothers me and makes my eyes water just thinking about it!!

January 2010 trip to Boston

Back to Boston again. This time we were unable to find anyone who could come with us. So Fred stayed at the hotel with the two younger kids and I went with Keith to the hospital. It was an easy surgery for him this time as they only had to use the laser...which does not cause much in swelling or pain. He did have a hard time coming out of the anesthisia, it took about 5 hours. We will have to re-evaluate this for the next surgery. The surgeon (Dr Duker)  said that we would need to see our retinal specialist (Dr Kim) in Burlington in 4 weeks. If he does not see a significant reduction in the amount of fluid in Keith's eye then Keith would need to come back down to Boston shortly after the appointment for a vitrectomy (which is where they will make 3 incisions in the eye and drain the fluid out, then they will replace it with a saline solution) I am not looking forward to this as this has many more complications. We went to Boston 2 days before his surgery so we were able to take the kids to the Boston Museum of Science! Wow was that fun!! For Christmas, Fred's parents gave the kids some money, so they pooled it and bought a years membership for the family which also includes like 100+ museums, zoos, and aquariums accross the US and Canada. They had a Harry Potter Exhibit that was great! Over priced, but great. I don't think that we even saw half of the museum and we were there for 6 hours. When we arrived home we were very lucky that our Church and friends had arranged to have meals delivered to our house for the rest of the week. It was such a relief not to have to worry about dinner while helping Keith recover!

There was an amazing lightning show!

Logan had to cover his ears for the loud "booms"

The Amazing Nano Brothers Juggling Show!

This was so cool. The kids laughed quite a bit!

A view of Fenway Park from the top of the Prudential Center!

One of the cool machines to take pictures of Keith's retina.

November trip to Boston

November 4th we went to Boston for another surgery on Keith's eye. My sister Holly came to hlep with the kids while we were with Keith at the hospital. What a great help. We did not have to worry about the kids at all. We were able to go for a walk around Boston and to the park the day before surgery. The surgery was a tough one this time as they did mostly cryo and that creates a lot of swelling. Keith is getting a little better at the whole process although he still really hates it. It took about 10 days for the swelling to go down, and about 6 weeks before the dilating drops wore off in his left eye. His right eye (the coats eye) has not retuned back to normal. During this surgery the cryo damaged the iris muscle and so his pupil remains larger then normal. We don't know if will ever go back to normal. It does not react to light anymore. His vision is about the same as before, he can only tell light from dark and can see dark shapes but no details. We are so llucky to have such great support from our family, friends and our church family who continues to pray for Keith.

Tufts Children's Floating Hospital

Checking out the pigeons. The kids loved how they would eat right from your hands!

Walking through the park in Boston!

Brothers checking out he scenery.

Mom and kids!

Sarah......

Aunt Holly chillin with the kids in the hotel

Mom and Keith, ready to go in the OR......

Keith playing on Mom's laptop during recovery at the hotel.

Still going.............

School is going very well so far. Keith seems to be managing quite well with his vision issues. He does have quite a hard time with reading or math pages with alot of problems on them as the words or numbers move as he still has some vision in his right eye. The brain still tries to use the signals from the right eye so that puts alot of strain on his left eye. The NeCAP tests are coming up at school soon and I am not sure how that is going to be as it involves alot of time spent reading and filling in answer pages. I really hope this goes well for him and that his teacher realizes he will need alot of breaks.
Sarah is really loving Kindergarten. She is a little social butterfly! She is always coming home telling me about the happenings of her little school life. Oh, the dramas I hear about! I am hoping though that there will be some more actual work as so far there has mostly been coloring and such in class and Sarah has been doing that for 2 years in preschool. She is ready for so much more.
As for Logan.....he is loving the only child life! And honestly , so am I! Our days are so much quieter and relaxed. We have playgroup on Wednesdays and storyhour on Fridays. The rest of the week is open. Eventually we will be going in once a week to volunteer in Sarah's class. Logan will spend all of his time at the sand table I am sure!!
The biggest thing that I am dealing with right now is the argument in our town about whether or not to designate 1 high school for our students or to continue allowing choice to our students. I am for choice! I do not like the high school that the school board is "looking" at and would move out of town before sending my child there. So I am helping to organize a group of town residents to keep our school choice alive. We will be meeting tomorrow to organize our thoughts as the town forum will be on Tuesday night. I think that some of the school board will be surprised at how much opposition there is to this issue!
Well I hope you all didn't find this too boring. Here are a few pictures from the past few weeks....enjoy!!

apple picking!

Keith at soccer!

Logan enjoying the newspaper;)

                                                               Just like Dad!!

My beautiful girl!!

Well, tomorrow is the first day of school for Keith and Sarah! Keith is moving upstairs to the 3rd grade. I met with his teacher and the principal about setting up a 504 plan for Keith. They are going to put bright colored tape on the steps so that Keith can see them better. He also will be getting placed on the right side of the classroom so that he can see the room better. I am feeling that this is going to be a good year. He has a teacher who is very involved and I am hoping that Keith will cope and start to love learning. Sarah had her Kindergarten orientation today. It was great, she had a fun time seeing her room and playing with her classmates. She was Miss chatterbox on the ride home!
Both kids have started soccer for this year. Sarah begged me to be her coach and of course I agreed. So the only night we do not have practice is on Fridays. On Keith's first practice he got hit in his bad eye with a soccer ball. We took him in to see the retinal specialist on Wednesday and had him checked out. The Dr. said that the good news was that he could finally see the back of Keith's retina, the bad new though was that he could see more bleeders so he would be having laser and maybe cryo when we go back to Boston in November.....Hopefully we can get these bleeders to stop and get some vision back. I know that is a long shot but I will take anything I can get. I will see if I can post some pics later.I just wanted to try and get some new info out to as many people as I can! God Bless you all!!!

My Special Little Man Keith and his battle against Coats Disease

We started this long journey on Friday July 10th 2009. Keith was complaining that morning that his eye was bothering him and that he could not see. i took his glasses and washed them thinking it was just dirty glasses again. Then about an hour later he told me that he could see "bugs" in his eye. I went over to him and looked in his eye to see if he had anything in his eye that could be causing him the trouble. When I could not find anything I tried to clean out his eye with cold water. It did not help....When I asked him to describe exactly what he saw he said it was like a big black bug in his eye that he could not see through and that holding out his stretched hand in front of him, it was about an inch big. So I called my pediatrician and said that I was not sure if I was being an over paranoid Mom or not. She said to bring him in because you can never be too careful with the eye. I brought him in, that afternoon, and the Doctor put dye in his eye and held up the black light to it to see if there were any scratches to his cornea. There were none. Now to take a step back Keith was diagnosed at age 5 with amblyopia (lazy eye) in his right eye. He was supposed to go to his regular ophthamologist check up on the following Monday. So the doc said that she thought we could wait until then unless Keith had anymore problems over the weekend. So that Monday we were thinking that it would not be any big deal, so we took all three of our kids to the appointment and had the van packed to head to the beach. The Ophthamologist decided to dilate his eyes to get a better view of what was going on with him. After a 20 minute exam and her partner looking as well we were told that his optic nerve was swollen and that there was alot of cloudy fluid in the eye. She seemed to think that this could be caused by cat scratch fever. She said that this was beyond her expertise so she called a colleague that was a retinal specialist and told us that they would see him now and we had to go straight over. When we got there we had to wait awhile then we went in and all the docs took turns looking at him and seemed to be in awe. Saying that this was not a usual thing to see in a healthy young boy. The doc then said we needed to go over to the hospital cause he ordered a full blood work up. Poor Keith had spent the last 6 hours being looked at and poked at and now he had to get poked with a needle for blood and get a chest x-ray. Then he was to go see our pediatrician the next morning for a TB test and then the retinal specialist wanted to see him everyday that week. I think we spent about 25-30 hours in hospitals and Doctor's offices that week.

We took a long weekend of camping and relaxation. (we had to get permission and promise that we would be back first thing on Tuesday morning. When we got back from our trip there was a message on the answering machine from Dr. Kim (the retinal specialist) that he put Keith on the OR schedule for that coming Thursday to go under anesthesia for a more thorough exam. We were crazy nervous and so when we went in to the appointment on Tuesday we had a zillion questions. He told us that the labs all came back normal and that there was no infection so it was not cat scratch. He said that he had it narrowed down to two genetic diseases/disorders. Von Hipple Lindeau or Coats Disease. Both which were very serious and had to be acted on right away. On Thursday Dr. Kim came out of the OR and told us he was pretty sure that it was Coats disease, but that he would like to send us down to Boston for a second opinion and probably surgery. We went down to Boston the following Tuesday to meet Dr. Jay Duker at New England Eye Center of Tufts Hospital. We did our research on this Dr. and found that he had a great background and was very respected in the ophthalmology field. So we scheduled his surgery for the following Monday morning August 2nd 2009.

We decided to head down a few days early and see the sights of Boston and let Keith have his favorite dinner (lobster!) We had a very special babysitter come with us so that we could have all the kids with us and be able to concentrate on Keith when it came time for surgery day.













The giant teddy bear outside of the Tuffs Floating Children's Hospital








I have never been so scared for my child. We brought the computer with us as this is the one thing that can distract Keith from almost everything! We talked to the anesthesiologist about what had worked in the past for Keith and his procedures. I had spoken with the past anesthesiologist about the fact that it was such a battle to get the "sleepy juice" into Keith. She suggested that we use a nose drop that would make him more relaxed and there would only be a few drops. Unfortunately the anesthesiologist did not have that available. Dr. Duker's fellow resident came in to our room to give Keith the dilating drops (3 in each eye) I tried to tell him that it would be better to wait until Keith was under to give them as he puts up an incredible fight even with 2 adults trying to pin him down. He said that he has handled kids before and was sure he could get them in. After 5 minutes of wrestling and a kick to the chest the fellow says "I think we should wait until he is under to do these" I said " That's a fantastic idea Dr." with (as you can imagine) a big smile on my face. Sometimes parents really know what is best with their kids! After a few more minutes I got dressed up in my OR outfit (very flattering) and went to the OR with Keith. Very scary for me and for him. I was able to lay in the bed with Keith in my arm. We held up the mask to his face and encouraged him to talk and breath deeply. Not even 1 minute and he was snoring. I cried as I kissed him and said goodbye....I was hoping and praying and facebooking while they were working on his eye. I had many more questions to ask the doc but when he came out and said that Keith was heading to recovery I just wanted him to be quiet so that I could go see my baby. He did tell us that it was definitely Coats and that he was able to do 148 blasts of laser and 9 blasts of cryo.









My boy was so upset waking up he complained so much about his eye hurting. They gave him 2 injections of pain meds into his iv and he was back asleep again. It seemed to take forever for him to wake up. We were there from 7am to 1pm. Luckily our hotel was right across the street from the hospital and we were able to carry him over and be in the dark in about 10 minutes.

He slept for the rest of the day and only had a few bites of dinner and back to sleep. The next day he looked like he lost a fight at school. His eye was swollen shut and he could not open it. Dr.. Duker did a post op visit and said that he was doing as expected and that we could go home, 4 hour trip north. Very sleepy boy (very unlike him).

By the 3rd day he could open his eye and that is when he scared the crap out of me. The doctor had not told me that it was normal for the white of the eye to turn blood red so I freaked and took his temp. He was at 100.5degrees F! So I panicked and called the eye doc, they told me they thought it was ok but I should take him to the pediatrician. I took him to the on call Doc and she had never heard of coats. She was also very freaked by Keith's blood eye and told me to head straight to the retinal specialist and to call him from the road. I had Fred (my husband) call while I was driving and Dr. Kim said that it was normal for the eye to be red like that and that he may even have bloody tears. Talk about relief and frustration all at once!!! Next time I told the doctor to tell me in advance about all the things that could be normal so that I would be better prepared. After about the 5th day Keith's eye looked normal again. He still has about only 20/200 in that eye. We are due to go back to Dr. Kim for a check up to see how things are healing at the end of August. We also have a surgery date in Boston for November 2nd. I have spent alot of time reading and researching everything that I can get my hands and eyes on. I have found there is a drug (Lucentis) that has been used to treat some other eye conditions as well as Coats. I will be asking Dr. Kim about it at our check up. Until then more research. I hope that anyone who is going through this finds this blog helpful. I would love to hear from you if you are in the same situation as it would be great to swap information.