We would appreciate your prayers. Saturday we took Hannah to the doctor for a rash she had. They checked her oxygen rate and it was in the low 80's. This was concerning because she has been running in the low 90's for the last two years. I contacted her cardio doc and he asked how she looked and how she was acting. She looks great and does get more winded easily. He said he wanted to see her on Thursday. Tonight she was getting winded fast walking from one room to the next so I decided to check her oxygen level. It was now in the 70's. I'm getting more concerned. Please pray for our sweet girl. She has come so far in the last two years. We are so grateful for the amazing progress she has made and have always known there could be set backs and that she still has another surgery ahead of her. You just can never prepare yourself for moments like these. But just as we have been trusting that the Lord has Noah in the palm of his hand, we know this is true for Hannah as well. She belongs to him and he will guide her path. Pleas pray that in our moments of fear we will hold fast to his truths. She goes to the doc on Thursday morning and we will know more then. For now we will wait and trust.
Please also pray for dear friends of ours who are battling physical ailments in the midst of bringing home two children from Ethiopia recently. They are still trying to adjust to being a family of six, while bonding, dealing with language barriers, schooling, teaching, and more.
On a happier note Ivy is home from the hospital and doing so well. Check out the amazing work God did in this sweet girl.
Sunday, April 29, 2012
Thursday, April 19, 2012
Today we made the all day trip to UCLA to find out my muscle biopsy results. One of the students came in first to see me. She explained that Dr. Shieh my doctor would be in to give me my results but that she wanted to examine me first. She did the normal walk for me, stand on your toes, checked my reflexes(which I don't have at all except for in my upper arms) and some other funny tests to check the muscles. She left and then both her and the doctor came in had me do a few more funny things and then they left. After a few more minutes the doctor came in to explain the results and direction he is taking my case. He said that he was able to pull gene samples from my muscle to help him narrow down some possibilities. They spent some more time examining me on a video camera. They are going to do some genetic testing on the top three myopathies that matched the genes taken from the muscles and we will go back in June. They also want us to get a referral for Noah to come see them. They believe that whatever I have I have passed down to him just like my father passed on to me. This could explain all that he has endured in the last few months. His cardiologist agrees and is in contact with my Neurologist. With most of the Myopathy's they are looking at the biggest threat is the effect it has on the heart. I realize now how much the Lord has preserved my life and what a blessing it is to be alive. So thankful for my pacer and for catching it when we did. I know he has Noah in the palm of his hand and will protect his little heart. We are hopeful for more answers and will lean on the lord as we wait on him. Please keep our family in your prayers.
Saturday, April 14, 2012
I can still remember every sound, and every sight on that early morning two years ago. Jason had called from the hospital at 4 in the morning. He made me go home to sleep with the boys because I hadn't gotten any sleep for days. I did not want to leave Hannah but she was sedated from a procedure the following day and would most likely sleep through the night. Jasons voice quivered on the phone and he just kept telling me she's not gonna make it. They are working on her but she's not gonna make it. My heart sank. I quickly called both my mom and donna to get me to the hospital. I remember my father in law holding my hand and looking out the window and praying. Everything was so quiet and still and it seemed like the longest car ride I had ever taken. when I got to her room there were lots of people in the room working on her. I went to her and started kissing her and talking to her. The doctor told me to get closer and to not get emotional. I remember I was so mad at him. The doctor them began to tell us that she was going down hill fast and that she most likely had a 30% chance of survival. A number I will never ever forget or that we had the option to keep her comfortable and she would eventually go. If we opted for surgery she would most likely have brain damage and not live a normal life. I remember asking everyone to leave the room except for Dr. Chang. It's amazing how brave you get when you are in a situation like this. My mama bear claws were out in full force. I looked at Dr. Chang and told him "You do whatever you need to do to save our baby girls life." He said okay and they were off and running. I will never forget before they took her to surgery. I was stroking her head telling her not to give up that she was a fighter. I told her that she had a story to tell and to make these doctors scratch there heads. At that moment she opened her eyes for a brief second and we were stunned. Itwas just what this momma needed. I just believed with all my heart that this was not the end for our little girl. After that I remember trying to eat something and getting a precious moment alone with my husband in a hallway. I hugged Jason tight telling him if we were only to lover her for these brief two weeks then thats what God had planned and I wouldn't take back one moment of it. The waiting seemed like an eternity. The doctor came out so somber faced we thought she was gone. He was stunned and couldn't give an explanation for how her arteries opened up overnight and how they were able to do some unplanned repairs. He said there is no text book explanation for this we don't know how it happened. Oh but we do :) We know exactly how it happened. So much more I remember about that day I could go on and on. The Lord did an amazing miraculous thing two years ago. He is such a big God and we are so thankful for the ways he continues to bless Hannah's little life. This morning we were snuggling with our little one telling her all about that day. I want her to know how the lord values her and I love that when she points to her scars and I ask her what it's from she sweetly sais "Jesus fixed my heart". He sure did baby girl he sure did.
Monday, April 9, 2012
We had such a beautiful day. It was a beautiful morning celebrating our risen savior and then a nice brunch with family. The kids had a blast searching for their baskets and then hunting for Easter eggs. Hannah even managed to keep her white linen dress clean AMAZING. It was restful and very enjoyable. Thanking the Lord for his ultimate gift on our behalf.
Saturday, April 7, 2012
Sorry I have not updated all week. It had been a busy week full of doctor appointments and running around and honestly I did not have the energy to sit and write. On Friday Noah's teacher called me to come pick him up. He was tired and complaining of a headache and chest pains. When I brought him home his headache was so bad he was sensitive to light. When I tried to move him he threw up. We were concerned given everything that has been going on with him. I called his doctor and he said to take him to ER. We are blessed to know a great head doctor of the ER at ST.Jude. I called his wife to see if he was working and she said yes bring him in. We got in right away. His heart showed the same abnormalities but after some tests they determined he had strep again and a virus. This would make 5 episodes of strep in three months. We went home and started him on more antibiotics. Monday we took Jonah in to see the ENT doc for his followup apointment. Jonah checked out great. I had the doctor look over Noah and told him about all the strep he has been having. He took a look at his tonsils and said they need to come out. REALLY? Are you serious? Tuesday I took Hannah to the dermatologist. She has a dark birthmark mole nevis on her chest. She has to get it looked at every year to make sure it doesn't grow or get any darker. Guess what? It grew and they are referring us to a pediatric plastic surgeon. REALLY? Are you serious? Wednesday was Noah's appointment with his cardiologist. After hearing about Noah's strep results, the doctor took ten vials of blood to check for viruses that could cause infection of the heart. He is hoping the two are linked. Really he doesn't have any answers for us and is waiting for my results. It is very frustrating to hear we recognize something is going on with your son and we are concerned with what we see but have no idea where to go but to wait and see. REALLY? Are you serious? We will see him again next month. You can pray that something comes back with the blood work that will give them an answer. It has been tough but as I ended this week I was faced with a reminder that Christ himself endured the ultimate pain on our behalf. On OUR behalf! Wretched sinners like us so undeserving of his love. Yet he paid the ultimate price on our behalf. REALLY? Are you serious? I will give thanks and remind myself that for this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison. 2Cor 4:17