Wednesday, February 29, 2012
I have to start off by saying that this appointment did not go anything like we expected. We had the usual ultrasound of the heart and then waited to see the doctor. The doctor started off by saying that he does not feel like a cath procedure is necessary at this time. He looked over his file from UCLA and asked us a lot of questions. Without putting down the other doctors, he explained to us that he did not feel that what Noah has is Restrictive Cardiomyopathy. He understands why they would feel that way but does not see enough to convince him to put Noah through all the risk of a cath lab. He does believe that something is wrong given the abnormal EKG's on every reading and believes that it is an electrical issue passed down from me and that he most likely has whatever muscle myopathy I have. This is what Jason and I have felt in our hearts since the beginning. He is going to do a tread mill stress test to rule some things out and wans to see the readings from his event monitor. He might do an EP electrical study or cath test in the future but wants to take a slower approach to figure things out. I was happy about this. We of coarse want answers but also do not want to put Noah through unnecessary testing just to rule out what he thinks is not there. I hope this is making sense. We have truly seen and felt the Lord today. We have battled our insurance and ran into so many road blocks trying to get into CHOC. It really felt like today that the Lord showed us why he wanted us at CHLA. Noah was thrilled with the appointment. He did not have to be poked today and was told he was not having the cath test. He still has not been cleared to run and resume normal activity until we get the results of his stress test. They are suppose to call us soon to make that appointment. I cannot tell you how much Noah's mood has changed since this appointment. He is beaming and so looking forward to celebrating his birthday in just a few short days.
As for me I received my approval for my biopsy so I will be scheduling that tomorrow. Not looking forward to it but i know it's necessary :( Pray for continued strength for me. My hands have really been bothering me. The sooner we get a diagnoses on me the closer we will be to figuring out what is also going on with Noah. Whatever is going on with his heart we have caught it at an early stage so that is good.
Jonah has his first round of allergy testing tomorrow morning with the second round following next week. Not sure how to pray about this one. I kinda hope something shows up so we can help him but at the same time I feel bad about weekly allergy shots. hmm just pray the Lord's will be done. He has an apt. on the 14th with the ENT doctor to discuss getting his tonsils removed.
Hannah has an appointment next month and we will talk about scheduling her cath lab test then. she is doing fine but the test is necessary to check her pressures before the next big surgery.
Jason is very healthy praise the Lord but it is so difficult for him to watch his family go through so much. We both know this is where God is using us and we continue to cling to his promises every day.
We are so thankful for all of your prayers we truly can't say it enough. We have been blessed by so many of you.
Linda Howington Donna showed me the song that you personalized with Noah's name on it and it touched my heart. I love that song and to sing it with his name in it brought tears to my eyes.
We do have a maker and he has formed our hearts.
Thursday, February 23, 2012
Well today was another day full of excitement. Noah woke up with a bad rash and puffy lip. We had no idea where to take him so we went back to his old pediatric doc. We discovered that the rash was hand, foot, mouth virus. This poor guy has had strep twice and now this virus all in the last eight weeks. They were very concerned about his heart handling all these viruses. Given the chest pain he had yesterday and now this virus she thought he needed to be seen right away by a cardiologist. Since we don't have one yet we went to CHLA hospital. They evaluated him, did an ekg and xrays. They agreed that he needed further testing and a cath lab test done but that all these could wait to be scheduled. We will call tomorrow to get in next week to see a new Cardiologist at CHLA. We are sad about this because we LOVE Dr. Chang and CHOC but feel like maybe the Lord has been leading us to CHLA all along. We have been fighting so hard and coming up against so many road blocks that maybe this is just the place he has wanted us all along. We will lay this all at his feet and take it step by step. Its not about our plans but his ultimate plan and we trust in that completely. He has never failed us even in the hardest of times. His love never fails. Noah was sad to miss his co-op again today and super sad about missing friday school. It just kills me to see him so disheartened. The ER doc said no activity until cleared by his cardiologist. He said if he develops a cough, worse chest pains or labored breathing to bring him back in.
Please continue to lift our family up in prayer. We are all learning to lean on the Lord, to accept help,to have patience, and to lay our burdens down.
Wednesday, February 22, 2012
Nothing new to report. We have spent the last couple of days advocating for our son and dealing with insurance mess. We have gotten nowhere. We have to go back to our old group and start from scratch. We will do this tomorrow and trust that God will protect Noah as we wait for more appointments with new doctors. His plan is greater than ours and he sees things that we don't always see. He is giving me encouragement when I'm at my weariest points and for that I'm so grateful.
Our Friends are in Ethiopia right now preparing to bring there two sons home. This has given me incredible joy. You can read all about there journey here
I can not say thank you enough for all the meals and cards and help with the kiddos. What a blessing. Noah has had a good week. He has been in better spirits. He said the Lord answered his prayers about not having the Cath test. :) bless his heart. Hate to break the news to him about more visits when he sais something like that. Continue to keep us in your prayers.
Sunday, February 19, 2012
This weekend I had the chance to get away with 120 woman at our Church's woman's retreat. It was a wonderful time. I had a difficult time at the beginning dealing with all the emotions I was feeling with everything that has gone on recently. I discovered that I had been racing from one thing to the next and really haven't taken everything in. The more people talked with me, asked details, and prayed the more emotional and heavy hearted I felt. By Sat afternoon I was ready to just hide in my hotel room and escape. Our speakers spoke on Friendship and I just really felt like I was lacking big time in this area, I haven't been able to be there for my friends like I want to and also feeling like I was gonna be a burden to my friends and eventually suck them dry. I decided to go to the night session and was so glad I did. I felt God wrap his arms around me and he reminded me that this is where he has me and I need to allow people to link arms with me and be my strength in a time when I feel at my weakest. This is a area I need to grow in which is why he probably has me in this place :) I ended the retreat feeling refreshed until............
When I got home there was a message from our doctors office saying that we did not get the approval to have Noah's procedure done on the 28th. UGGGHHH!!!! We had fought our insurance as well as St. Joseph's medical group to allow us to switch Noah from Regal(his old group) to St. Josephs(where the amazing Dr. Chang is at) Our insurance told us that they could not switch unless St. Joseph's gave the ok. St. Josephs would not give the ok because it was past open enrollment. We pleaded with our insurance and they finally made an exception because Hannah is already in there group. Our insurance issued our new cards and we have had several visits in the new group all month. All of a sudden when they requested the approval of this procedure St. Joseph's steps in and sais NO and is stating that they are not accepting us into the group and is in fact fighting our insurance. WHATTT??? This is crazy! Why does this have to be so difficult and why are we getting hit with so many hard things? I know these posts are usually more encouraging but this news has just hit me so hard and I'm struggling. I covet your prayers more than ever. I'm feeling weary and am struggling with what to do to ensure we get Noah the care he needs. This may mean prolonged procedures and more added doctor appointments. It may mean starting all over with new doctors which we dread. We are confident he is working it all out but when you are hit with scary news about your children, food poisoning, tax stuff, jury duty, rescheduling work travel, and so much more it gets so hard to bare sometimes.
Thursday, February 16, 2012
Today we went back to UCLA to find out if Noah had some inflamation on his heart. I wish I could be sharing some great news with you all. Unfortunately they have ruled out inflamation and because their is still abnormalities on his EKG they must do a Cath Lab test. It is scheduled for February 28th at 7:30 a.m.
Wednesday, February 8, 2012
Well today was a long day but we are feeling thankful for a good visit. I will start with Noah. A cardiologist from UCLA came and evaluated Noah. She explained to us that Dr. Chang was concerned that Noah was showing signs of Cardio Myopathy and ordered a cath lab test done on him. All four EKG's done on Noah were all very different and she felt that if it was Cardio Myopathy they might not see so many changes in each EKG. She felt like it was showing signs of inflamation around the heart. After hearing that he recently had strep she seemed even more convinced that it is most likely inflamation. He needs to take Ibuprofen three times a day for a week,continue to wear his monitor, they did blood work and we will know for sure if it is in fact inflamation when we return to UCLA next Thursday. If it is not inflamation then they believe it is the early signs of cardio myopathy and they will do a cath test right away. We are obviously praying that it is just inflamation. It looks very promising. Noah did great today. He was sad that he had to go to the doctors again but made the most of it.
My visit was very promising as well. These Neurologist know their stuff. You can tell they have a lot of experience with Muscle disease patients and I was very thankful for that. They want to do a muscle biopsy on me :( Ouch! They feel this is important to gather specific genes from the muscle tissue. These genes will give them more of an idea of what groups I fall under and rule out others. He had his top three that he thinks I fit the category for one being Limb Girdle disease and two others with complicated names that I can not remember. They clearly saw that I had a muscle disease and pointed out all of the same muscle weakness the other doctors had pointed out. We wait for insurance to authorize the muscle biopsy which could take a few weeks and then schedule it at UCLA. Then we will follow up with them on how they will further proceed. I'm hopeful for a diagnosis and was pleased to hear them say how they have come along way in finding treatments and advances to help combat these muscle diseases. I LOVED hearing that. Although we still don't have answers we trust that the Lord does and in his time hopefully we will find out. I'm very tired so I hope I explained things well. Feel free to ask us any questions.
Thanks for all your prayers, meals, cards and sweet gifts. We feel so blessed by all of you. Your love and support is making it easier to walk through this.
Monday, February 6, 2012
I started the day off rejoicing about the ways in which the Lord is already using this trial of ours to share about his great love to others thankful for the opportunities. I think he graciously gave me this reminder to prepare me for what was to come later in the day. Both Hannah and Noah had an appointment to see Dr. Chang today. For Hannah it was her normal routine visit and for Noah it was a follow up and another exam. My expectation for the day was to get great results for Hannah and maybe some more info on Noah and an event monitor for him. We were at this visit for almost five hours. The Dr. was very concerned about Noahs heart muscle and told us at one point in the visit that we might go to ER and then transferred to UCLA. He came in 45 min later and told me to hang tight that his partner at UCLA would be calling me to figure out what to do next. He also said that he would need a Catheter test done in the next couple of days or week. This was the same test he said on Wed. that he did not want to do because he thought it was too risky. Then he told me that he saw some abnormal arrythmias with Hannah and wanted to put a 24 hour monitor on her. He said he wants to do a cath on her but will wait until we get Noah stable. WOW! This was a lot to take in as I sat there starring at both of my babies trying to hold in all my emotions for them. If your having a hard time keeping up you can only imagine how I was feeling :) The doctor then left again and came back to have me talk with the Dr. from UCLA she was great and explained that they need to do some extensive tests and asked if we could bring him down tomorrow. I told her I would be there wednesday could he wait until then. She said yes and said they would be calling tomorrow to set up the cath test. This is all very unsettling as they talked about a lot of terms we were unfamiliar with and could not give any real answers except that they are concerned. He had two episodes while we were at the doctor and they put a monitor on him that he is to wear for the next couple of weeks. Please pray for both Noah and Hannah. Pray that the doctors would have wisdom in figuring things out and for us as we want to be strong and set good examples for our kids always looking for ways we can see our father at work.
Thursday, February 2, 2012
We have been to see Dr. Chang a lot in the last week. Dr. Chang is the amazing doctor that reviewed Hannah's file before we brought her home, helped us get home from China and was influential in helping save our daughters life. Although we know who the ultimate healer was :) After battling our insurance they allowed us to switch noah into his group. This doctor has gone above and beyond for our family and I can't tell you what a blessing he is. Noah has had lots of episodes this week where he complains of his chest hurting and his heart thumping hard. This has been very scary for us. They ordered a 30 day heart monitor for him to wear and we are hoping to get it next week. Why does insurance have to approve everything? Ugghh!!! We still do not have a lot of answers yet but are hopeful and the doctor wants to see him Monday. Noah asked if he could run and play yet. Dr. Chang said not yet and Noah burst into tears. It breaks my heart to see him sad and just begging to go back to normal life. He understands it wont be forever but to an almost 9 year old boy a week with out running feels like a lifetime. Please continue to pray for him and for the rest of us as we wait on the Lord for answers.