Saturday, March 31, 2012
We have had this precious girl for two years now. We celebrated her Gotcha Day Thursday the 29th. I have been wanting to do a post but haven't had a chance to sit long enough. we celebrated by going out to dinner at PF Changs. We opened gifts and Hannah slurped down all her noodles. Still her favorite. She still amazes us as we recall all that she has been through. When they placed her in my arms I was in a state of panic because of how life less she was. She was literally fighting to stay alive. Now she is so full of life, busy, loud and energetic. A totally different girl. We love her spunky personality, and that she could be in the middle of something and stop to tell me that she loves me. Melts my heart every time. We look forward to forever with her. We love you baby girl.
Friday, March 30, 2012
Monday, March 26, 2012
My heart is grieving with sadness. We had expected and hoped that Noah's test would go well today and they would allow him to go back to normal activity. Sadly this was not the case. During Noah's treadmill stress test every time they increased the pace they expected his blood pressure to increase and it did the opposite it actually lowered his blood pressure and he became more fatigued with every intensity and incline. The doctor is very concerned as are we. He feels strongly that whatever Myopathy I have he does as well. He wants to talk with my neurologist who is helping diagnose me, he also wants all of his work up that was done from UCLA. We see him next wednesday and will decide then how he wants to proceed. He might have to do the heart biopsy cath after all but wants to avoid it if necessary which is why he wants to talk to my Neurologist to get the results of my recent Biopsy. He also mentioned that he thinks he may have Desmin Myopathy. Noah was very disheartened as he expected to hear he could run and play sports. He said he could lightly run but to listen to his body and if he got tired to rest. Our hearts our heavy but Sundays message was a great reminder of God using these things to discipline or refine. We will continue to hold fast to his truths and cling to him even more. Please pray for Noah as he takes this all in and tries hard to understand it all. Pray for wisdom for the doctors and for Jason and I as we juggle the many physical needs in our family. We love and thank you all for your amazing support during this hard season.
Saturday, March 24, 2012
Yesterday was my muscle biopsy. For whatever reason I did not expect to be in this much pain. Not sure what I was thinking. I kinda forgot they have to go through like three layers to get to the muscle. I knew it was not going to be a fun procedure. I asked them right away if they could give me something to calm my nerves and they politely said no but allowed me to bring in my ipod. They gave me like 20 shots of numbing juice in my leg no exaggeration. When they were through a few layers I started to feel some pain and they inserted some more numbing juice. Not a fun experience. They could tell I was very nervous so they started asking me questions about my kids. So glad they did because it calmed me down and gave me the opportunity to share Hannah's story and tell them the ways God revealed himself through her story. This made it all worth it. After they were done they helped me down and thats where the pain began. As long as I kept my leg straight and did not tighten the muscle I was good. You quickly realize how much you use certain muscles when you are in a situation like this. We go back in three weeks to hear the results of the biopsy. They took more than they needed so they would not have to do this again(Thank you Jesus). If they do not end up using the extra tissue they will donate it for research. I have a 2 inch incision with stitches that will eventually dissolve. Hopeful for some good results in three weeks. Thanks for all the texts, calls, meals, comments and cards we felt your prayers this week.
Thursday, March 22, 2012
Jonah had his surgery early this morning. It went just as Jason and I had predicted. When we arrived he freaked out and started crying. We were able to calm him down while we waited in the lobby. when they called us back and he saw the hospital bed he started kicking and screaming. The nurses(three) came in and they held him down with Jasons help to give him some medicine to calm him. After he spit it out on them they decided to get more and put it up his nose. In a matter of minutes he was a much calmer boy. In fact the anesthesiologist was asking me if he was allergic to any medication and Jonah piped in "no I'm allergic to people", with his silly drunken giggle. The surgery took about 30 minutes and when we saw him in recovery he was in a lot of pain. Once we got home and gave him some pain relief he has been good all day. He has showed us many times how he can breathe through his nose. This feels so good and new to him after not being able to for three years. The doctor called and said day five is the worst of the pain. We have a long week ahead of us.
Tomorrow is my long awaited muscle biopsy. I'm not really sure what to expect. I know they will take it from my leg, it will require stitches and a small scar. It is local anesthetic which I'm not happy about. I will be sore for about 5 weeks. I'm nervous but happy to get it behind me and one step closer to finding a diagnoses.
Thanks for all the prayers today. It really feels like we are getting up this hill.
Tuesday, March 20, 2012
So after listening to Jonah struggle to take breaths last night while he was sleeping, we decided to talk to the ENT doctor to see if we could get his surgery done sooner. The surgeon agreed this needed to be moved up. Jonah will have his tonsils and adnoids taken out this Thursday at 8:30 a.m.. The procedure is short and we should be back home feeding him ice cream by noon. We asked the doctor what to do if he continues to struggle at night. He suggested we taken him to the ER to have them give him a steroid to shrink the tonsils. We are praying that we can avoid this. We will monitor him to see how bad he gets. It is never a dull moment around our house. Friday I have my muscle biopsy in the early morning at UCLA and then on Monday Noah will finally have his stress test at CHLA. It is a crazy week but we are so thankful to get all these procedure behind us. Some of them have been a long time coming. We are thankful for the ways you all have been loving us through these tiring days. Please continue to lift our family up in prayer.
Monday, March 19, 2012
One of my sweet Blogger friends Mary (who I got to meet last October) just brought her sweet girl home from China. Ivy is very sick and has a similar condition as Hannah. Ivy needs a valve replacement immediately. The doctors believe that a human valve is necessary for Ivy. They have a toddler one reserved for her but it is a little large and could possibly cause leaks and have other complications in the future. Please pray that a smaller one would come available. They are giving it 8 more days. If they do not come up with one in 8 days they will use the bigger one. Please pray for this little girl. Pray for a successful surgery, that the Lord would use Ivy to impact people all over the world. Pray for peace for Mary and the rest of her family. You can visit her blog here
Wednesday, March 14, 2012
Today was a great doctor appointment for Jonah. This poor boy has been dealing with allergy sinus stuff for three years. He lives with a box of kleenex next to him at all times. He can't breathe through his nose and at night has a hard time sleeping because his tonsils are enlarged and block his airway. Well today the ENT doctor took one look at him and said we need to take those tonsils and adnoids out immediately. We have been scared watching Jonah sleep at night. He has stopped breathing a number of times for a few seconds and always thrashes around the whole night. Hopefully my sweet blessing will have some relief. This will happen at the end of the month if not sooner. Your prayers would be appreciated this will be the first time Jonah will have any kind of procedure done. He is excited however about all the ice cream we have promised him. He will have it in the morning and go home on pain meds. He will have to miss two baseball games so he is sad about that. I got choked up when he asked if he could still go and watch his team.
Speaking of baseball. We had an incredible opportunity to switch leagues this year. He is playing La Mirada Pony League with Ben Orr as his Coach. Ben played for the minors and he is passionate about Jesus and baseball. In 2001 while playing professional baseball, Ben founded the "Called Up Baseball Camp" allowing him to share his baseball skills and reach the surrounding baseball community with the gospel of Jesus Christ. Could not get a better coach. He does an amazing job loving on these kids and getting them excited about baseball, building up there self esteem and sharing the love of Jesus and his attributes with them. They have a character lesson each practice and even great homework. It's gonna be a great season and we feel so blessed. GOOOOOOOOOO A's
Sunday, March 11, 2012
Sorry it has been awhile since my last update. I have to say it has been nice not having much to report on :) We had a week with no doctor appointments which is a first in a really long time.
Some good reports to share:
Noah has not had an episode of chest pain or his heart hurting in a week.
We got the approval for his treadmill test and will be able to schedule it tomorrow.
I got the approval for my muscle biopsy and that will happen on March 23
Noah has been in great spirits and has learned to deal with his limited activity in a more positive way. We have seen his friends show amazing compassion and are so thankful for them.
Our friends have come along side us in beautiful ways. We seriously feel so completely blessed.
Things to pray for:
Good results from treadmill test and more direction from doctors regarding figuring out Noah's heart issue.
My muscle biopsy. I'm a baby when it comes to needles and I'm very nervous. Pray that they would get some good results from the gene samples that would help them indicate which Dystrophy I may be dealing with.
I have noticed in these last weeks more pain and weakness in my hands and legs. Jason got a new to him car and I had trouble driving it. I have to pull up my legs to step on the gas. These things are hard realizations for me. Pray that I would count my blessings and be thankful for the ways that God is working and using us through this storm. We don't want to lose sight of the bigger picture.
We also had the opportunity to put on an America World Adoption seminar where we had around 48 people attend. It was great to talk with so many people that are eager to start the process of adoption. We had the privilege of hearing from a couple of our dear friends share their adoption journeys and it was beautiful the way the lord spoke to each family in different ways and made himself known throughout their journey. Looking forward to seeing more orphans find forever families where they will not only know the Love of a mother and father but come to know the Love of their heavenly father.
Jonah also started baseball recently and we couldn't be more pleased with his coaches and team. will post more about that in a later blog with super cute pics :)
Tuesday, March 6, 2012
It has been a joy to see the glimmer back in Noah's eyes. He has been looking forward to his birthday for a couple of months now. Instead of going somewhere fun and inviting a friend he chose to have a party at home with a few of his buddies. He wanted a lego party so mom and dad got to work thinking of ideas. We had a building contest, a scavenger hunt, and they built their own racers and had fun racing them on a ramp Jason constructed. They all had a great time and it was the easiest party we have thrown yet. Since his actual birthday was on sunday. We went to lunch at Rain Forest Cafe and walked around Down Town Disney. To end his birthday week we had the family over yesterday to celebrate some more. I still can't believe he is nine. I'm so thankful for this blessing in my life. Noah we love you as far as our arms can reach and as high as the sky :)