Savannah has made tremendous progress over the last year. We have been going to Children's on 3rd Therapy Center in Birmingham at least once a week for about 6 months now for Savannah's physical therapy. We had been going to Baptist East Therapy Center in Montgomery prior to Bham. While we liked the person we worked with in Montgomery, they (the person and the equipment) just could not compare to the level of care received in Birmingham. Everyone we have worked with in Bham has been completely awesome and has gone above and beyond for Savannah. Savannah also enjoys therapy now, whereas before she did not. She looks forward to it and even at the age of 3, realizes how important it is. She tells me all the time that she likes to work hard at therapy because it helps her legs get better. She has seen the tremendous progress and wants more. Before starting her therapy in Birmingham, Savannah was able to take around 40 steps unassisted but she could not stop on command and she could not stand independently in the middle of the floor. She also could not bend down to pick something up and stand back up without falling. All of these things have been accomplished now. She can start, stop, and stand still all on command or when she wants to. She walks everywhere she wants to go, even throughout stores, with no assistance. Not even our hand. She is so proud of her new found independence and it makes her want to work even harder .I have never seen a 3 year old so focused and driven. It is very rare that she has an off day and she works SO hard! We are currently working on stairs. She can walk up stairs by herself while holding on to the rail but cannot walk downstairs yet. This is apparently a hard task for children with Cerebral Palsy because they have trouble disassociating the legs to do one at a time on the way down. We are also working on doing curbs without help. Back in November, we did what is called spider therapy. We went 3 days a week, 3 hours a day, for 3 weeks for therapy. This allowed her to make the most progress. Currently we are only going once a week but once she has her surgery that will increase ALOT! I will talk more about the surgery in my next post but please be in prayer about it.
On another note, Savannah just underwent her 8th shunt surgery. She started throwing up and was very irritable. Most kids, when they start throwing up, you just think stomach bug. We don't have that luxury. No matter what, if she starts throwing up, we have to rush her to the ER at children's hospital. Vomiting is one of the first signs of shunt malfunction. So many tests are run to determine if it is her shunt or just a virus. This time, it was her shunt. Dr. O went in and said that the catheter was clogged so he flushed it out. It only takes something as small as a needle point to clog it up. As always, immediately after surgery she was a completely different child. Back to her regular self.
Currently, we are having another slight issue that we would love for you to lift us in prayer about. Savannah has not been wanting to put pressure on her legs. Doctors are hoping that she just sprained them somehow but if she is no better by Monday we will be going in for an MRI for possible shunt complications. Shunt malfunction symptoms are so broad and can come about in many ways. We went to clinic this past Thursday to meet with 3 doctors and a physical therapist about her surgery to find out if she was going to be approved and to get everything started. She was approved, but we had to put the evaluations on hold since she was not wanting to walk. Not only are we worried that it is her shunt, we are also frustrated that this could potentially take her out of the running for the surgery for a while or push it back further. Our prayer is that she will start walking again proving that it was just soreness and that it will not be another shunt malfunction. Also, that we can go forward with all the presurgery testing.
Alot of people have asked why she has needed so many shunt revisions. I'll try to explain the best I can. When Savannah was born, she suffered 2 brain bleeds called intraventricular hemorrhage, or IVH. There are 4 grades of bleeds, 1 being the least serious and 4 being devastating. Savannah had a grade 4 on her left side and a grade 3 on the right. According to Science and Statistics, Savannah should be both mentally and physically incapacitated to the point where she would need to be put in a 24 hour care facility. If you know Savannah, you know that she has completely defied all odds and only suffers with the mild physical disability in her legs. When she was 3 weeks old we found out that the grade 4 bleed was blocking the natural path of the fluid and was forcing the fluid to back up in the ventricle causing it to swell. If the swelling was not alleviated, it would cause even more brain damage and even death. So that is when we were sent to Bham by helicopter, to have a shunt put in to allow the fluid to bypass that clogged path ways. We were told that it would take several years for all of the old blood from the bleed to completely go away and that it was possible for pieces to break off and clog up the shunt. This is what happens each time that she needs a revision. A piece of blood breaks off causing the fluid to back up and the ventricles to swell which in turn makes her very sick. So until that blood is completely gone, we will always be at risk for malfunction. Also, Dr. O told us this time that the grade 3 bleed needs to be shunted also. Doing this would make it less likely to clog as often. So this is another surgery we will probably have in the near future.
I also want to take time to thank each and every one of you for all the prayers that are lifted up for us daily. We could never begin to express the gratitude we feel for all those prayers. We know without a shadow of doubt that prayer is the reason that our sweet girl continues to defy the odds. We couldn't ask for better friends and family!
Here are a few pictures. The first one is at therapy where Savannah is wearing a special suit to help her realize her center of gravity better. This suit was very beneficial in helping her learn to stand in place. The second picture is Savannah at therapy working with a therapy dog. That is one of her favorite things. The 3rd and 4th pictures are of her at Friendship Farm at church. It was such a huge deal when she started being able to do all the songs and movements by herself. And the last picture is right after she had this last shunt revision.
