Friday, November 30, 2012

Dear God,

Last night Katie prayed for the first time. I asked to pray for her arm and she said no and sat up and said "Dear God." Then she looked at me for a little help, I said "Please help" and she echoed and finished it off with "Please help my arm feel better. Amen" It was moving and sweet, but it made me sad because deep down I want to make her hand better. I am her mommy I want to make her all better, but reality is no matter how hard I try, I can't, but my prayers can and God can! I pray throughout the day for God to heal her. I know and trust that He is with her and He is taking care of her. He has healed her once, He will do it again!
I understand why God says he wants us to have faith of a child because I see Katie's faith and Johnny's faith blossoming into beautiful hope, faith and love!
Dear God, Please help Katie's arm feel better. Amen

Tuesday, November 27, 2012

Overwhelmingly Thankful!

So overwhelmed by reality!
Katie's Ophthalmologist took the time to look at Katie's MRI from just after Katie's birth. He showed me where the optic nerve runs from the eye to the back side of the brain where our brain processes what we see. He said he can see the optic nerves and that they were affected by the brain damage. As he scrolled through the image of her brain the difference is clear between the dark spots (dead brain matter) and the living working healthy brain matter. It is overwhelming to see the amount of dark spots in her brain. Her chart says severe brain damage, I know she has severe brain damage, but to really see the large amount of brain damage is absolutely overwhelming. Her seizures have not seemed to affected her vision. Thank God! He does think she has some peripheral voids, but it is a miracle that she can see as well as she does.
There is NO ABSOLUTELY NO medical explanation for Katie and her thriving beautiful amazing progress. It was a bit disturbing that the Ophthalmologist has never heard of seizures causing this kind of paralysis of a specific limb. It is more disturbing that neither have any of the other doctors, nurses, or therapists that I've talked to. I pray that it is the seizures, because it is very scary if it is not. Pray with me that the seizures stop and she starts to use her left hand again! Pray that it is not permanent damage!! Pray for some movement, any movement in her hand!! Pray!!!! PLEASE PRAY!!!!! Our neurologist did not want to discuss the what ifs, so please pray we don't have to explore there!! We have seen improvement in her left shoulder and elbow and leg movement. Her hand is more relaxed but no movement! Pray! Pray hard, pray often!! And GIVE THANKS!! I thank God everyday and even more today because after seeing inside Katie's brain I know GOD did great work at rewiring her brain! He made the most of her healthy brain and has given her such great potential!!

So continue to pray for no more seizures, pray for her medicine to work, pray for movement of her left hand and continued progress on left side, pray for no side effects of medicine as we continue slowly increasing to optimal dosage amount, then give thanks for the great abilities of her healthy brain, give thanks for the rewiring of her brain, give thanks that she can see, walk, talk, communicate, give thanks for Katie! And I will give thanks for you!! I couldn't do it without you!
Thank you!
Thank you a thousands times over!

Wednesday, November 21, 2012

Pictures of Katie's last 3 week journey


The EEG did show seizure activity that funny as it is aren't directly related to the staring spells that caused us to have the EEG. The seizures are non-convulsive or absent seizures and were triggered by the virus that she had two and a half weeks ago. The weakness is one sided because her stroke effected the right side of her brain and the seizures are happening only in this brain damaged area. The weakness should improve as the medication starts working and the seizures stop. The main side effects of Keppra her medication are mood swings, weakness, and drowsiness. Pray for no side effects and no rash! Pray for no convulsive seizures! Pray for quick control of seizures and quick improvement of left sided weakness! Pray for our family! Pray for me- I am overwhelmed, exhausted and sad, but very thankful for Katie's general great health, her life, progress and a treatable diagnosis! God is good He has given me the strength through this all to do more than just survive, to thrive! My Katie is a gift and a blessing! I can't wait to see what great things she is being made to do and the beautiful woman she is growing into! I am sad today, but joy comes in the morning! I have so much to be thankful for this Thanksgiving!

Sunday, November 18, 2012

Katie and Her Continuing Journey

Katie needs more than one update to bring up to date! I will go start from the last two weeks and next update hopefully fill in the last four months. The last two weeks have been the most eventful to say the least, since the first two weeks! Two weeks ago Katie was coming down with a virus, but was in perfect health otherwise- happy, healthy, graduated from her regular therapy and doing awesome and as typical as she could be. Then Monday came and she slept all day and Tuesday she slept most of the day. Katie could not physically walk more than two steps without falling. She was so weak she could barely walk, let alone play Monday through Wednesday. Wednesday the Doctor saw her and we just agreed she was wiped out by the virus. I brought up Katie barely using her left side and we just brushed over it that she was just weak overall and it was more apparent on her already weaker side. The problem was as days passed it wasn't getting any better. I contacted Katie's neurologist and he said to update him in three days and go in immediately if her weakness got worse. In the next two days it didn't get worse, but it didn't get better. Last Sunday night Katie started crying inconsolably and I knew it was time to go to the Emergency Room. In 7 hours they took chest x-rays to rule out pneumonia, catheter for urine sample to rule out urinary track infection, CT Scan to rule out another stroke, hydrocephalus or shunt failure, blood tests to rule out many known strands of viruses and other blood causes, and respiratory swab to rule out flu and RSV and they successfully ruled out EVERYTHING they tested for! Katie had a minor ear infection and possibly a touch of pneumonia, so they admitted her to the hospital to give her antibiotics and monitor her. None of the Doctors could explain her left side weakness other than maybe weakness from whatever virus she did have. We left the hospital comforted it was not another stroke and her shunt was working properly!
Her pediatrician scheduled the EEG at her check up on Thursday when Katie spaced out and took a few seconds to respond. It could be an Absent seizure, which are seizures that are not convulsing but involve a blank stare and non-responsiveness for several seconds.
So, now it is a week after I took her to the ER and she is healthy again, a small occasional cough but overall normal health, but she still is not using her left arm. She can move her left arm if you ask her to raise it up, out, or give 10. But she is not moving her hand or fingers at all. It is absolutely heart wrenching to watch her use her right fingers to move her left fingers. She does not open her hand at all. Two weeks ago she loved to play with Legos, but now she uses her teeth to grip the block to take them apart and can't hold the blocks to play, stack and build. She has adapted to lay on the couch and rest the Itouch on her left forearm to play games on the Itouch. She will hang from the bars on the swing set, but only with one hand, where two weeks ago she would hold on with both hands and swing her feet up above her head. She will not push up on both arms and can't catch herself as she is falling. Katie has adapted in ways that are amazing, but to see her regress to where her left arm was over two years ago before therapy is painful and frustrating and so discouraging. We worked so hard, she worked so hard, so many therapy appointments and so much hard work... gone.
But my HOPE comes from the Lord, He healed her once He can do it again!! So we wait and we pray!
Tomorrow we will see the therapists who saw three weeks ago and they will see her regression. Tuesday we get an EEG to rule out any seizure activity. For the EEG test they will measure her brain for any seizure activity, it is a sleep-deprived test where the 24 hour period before the test she can have half her normal amount of sleep. So, pray tomorrow as I am not sure how I will keep her up to midnight and keep her awake from 5am until her test at 10am.  Wednesday we follow up with her neurologist. The next Tuesday we see her ophthalmologist, which was a scheduled routine visit about her vision, but now I have some concerns of changes in her vision.
So, now we continue to pray!! PRAY hard!! Pray for Katie, her left side, her vision, her unexplained weakness, for answers to what happened and why, for her EEG and pray for wisdom for her wonderful Doctors and us! THANK YOU!!
You are a wonderful gift to me, to Katie!! Thank you so much for all your love, support and prayers!!
YOU are part of Katie's MIRACLE!!!!