Tuesday, September 30, 2008

We took an impromptu vacation this weekend to Redondo Beach in Torrance, CA. It was the best therapy I have had in months. Shane was down in Los Angeles Friday and my dad was flying out Saturday from LAX so we decided Friday morning, let's get a hotel on the beach and spend the weekend! It was so fun having something to look forward to that took us away from the doldrums of the every day at home. We took the boys out to the Pier and enjoyed the beautiful view and ate good seafood, etc. The boys were very well behaved and slept well in their pack n' plays that the hotel provided. I was so proud of them and it was amazing to feel like a "normal" family!!

It was our last hurrah before the RSV season starts. I included photos of our great family vacation. Grandpa was able to join us for Friday evening and part of Saturday before flying home. It was fun to have him with us! We look forward to seeing you again on Friday Grandpa and Grandma to celebrate the first birthday of Noah and Jonah!

Monday, September 22, 2008

Great things that Jonah is doing! This may seem like small steps to most but what a joy to see Jonah enjoying the Discovery Center that we borrowed from our good friend (thanks Brooke!) We love to see his small steps of progress as we are trying to believe in all the many possibilities for our tiny man.

I read a good quote the other day from a woman whose 7th daughter was born with Down Syndrome. She said, "I can either dwell on the millions of things [she] won't do or celebrate the thousands of things she can do."

I was profoundly touched by her faith and I am striving to see the same miracles every day.
Cute photos of Noah playing with his new cup, the only one he will drink from right now. Also, we are so close to crawling! Noah is practically there, if he would just coordinate his hands and legs right he'd be off!

Friday, September 19, 2008

Today we decided to try Jonah again in the Discovery Center. He actually enjoyed it and we found him trying to lift his head and look at the toys, especially those making noise. We plan to put him in this more to see if it can't help with his upper body control.

Shane took today off to go down to Los Angeles and took Jonah early this morning to PT. He said he had a great session and was putting weight on his legs with his therapist. Hip hip hooray! We've noticed him trying more this week to put weight on his legs, he still has bouts with Clonus but we are keeping at it.

Today's update:

We visited with Dr. Lee at the Children's Hospital Los Angeles Vision Center. Dr. Lee performed a very thorough examination (to Jonah's dismay) which included swaddling Jonah down so he couldn't fight and a nurse to hold Jonah's head still while Dr. Lee used special specs to pry open his eyes and examine his retina, etc. He was happy to report that Jonah's retinas looked great, no detachment but a bit of lagging on the left eye which may contribute slightly to his Strabismus but overall his retinas are clear and looking healthy. He said the scar tissue from his ROP surgery has lessened (good news) and he thought that Jonah should be able to have good vision, however...he did say there are always exceptions. He mentioned they often see post-ROP surgery preemies who have perfect retinas but poor vision so now it is a matter of waiting.

He was not concerned with the lack of dilation with his pupils, that is two specialists now who are not concerned with the fact that his pupils do not dilate. Apparently this may just be the way things are.

He deferred any additional surgeries for Strabismus to Dr. Kelly in Madera. He said he researched her and found she was well experienced and he has heard that she is not one to rush a child in to surgery if it is not warranted.

These are all good things to hear, I still wish there would have been more clear answers regarding his actual vision. We still worry about his slow progress with finding things visually, tracking objects, faces, etc. but it seems that everyone agrees that with preemies at this age you just have to wait to find out what the ending situation will be.

For now, it will just need to be a matter of prayer.

Monday, September 15, 2008

I loved this video of Noah, I wish I would have captured this morning. He was jumping up and down and giggling so much...it was adorable!
Cute photos of the boys with Grandpa. I love how Noah stole Grandpa's specs plus Jonah getting love from Grandpa. So cute!

Friday, September 12, 2008

Good job Noah! Today he weighed in at 15 pounds 5 ounces. Hip hip hooray!

Wednesday, September 10, 2008

Exciting things that Noah is doing! We almost have him successfully sitting on his own, right now he manages several minutes at a time of sitting but eventually falls back in to his rolling position. We are trying to get him to accomplish this before October. He also has started holding his bottle more and loves his biter biscuits. I had to include a photo of Noah after he had fallen asleep in his Discovery Center. Playing is so hard!

Cute photos of Jonah. I also included a couple of shots of his new helmet. Can you tell what Jonah's favorite past time is? Sleeping!! He loves cuddling with daddy (definitely a daddy's boy) and Grandpa too.

Just a quick posting. Jonah has cut his bottom two teeth and we had a few scary nights of lots of fussing....thank goodness his teeth came in soon thereafter and we knew the cause of the extra fussiness!

Noah's two adorable teeth are growing and he continues to give us a hard time with feeding. We've been praying a lot and trying to be creative to get food down him, continuing sometimes with syringe feeding.

Noah stopped his Lasix (one less med!) and we are trying to see if we can wean his Potassium Chloride as well as Sodium Chloride. If we are lucky we might be able to wean him off both completely and that will have reduced a few meds with only two diuretics, his laxatives and reflux meds to go! Phew!

Noah continues off and on with his spit ups, we are thinking he might just be trying to get used to his solids but I am praying that we aren't looking at possible food allergies as that is the last thing we need to add to our plate. Some days though it feels like the only thing we do is clean up Noah's throw up from all over the place and try to get more food in to him.

Jonah got his helmet! I am going to include some photos on our blog. I like it, it is clear, no fancy colors but that is perfectly ok with me. I prefer it actually, it draws less attention. He is NOT a fan and yesterday afternoon was pretty rough with a lot of screaming and fussing. Today has been a bit better and hopefully over the next few days he will adjust completely. Like I said earlier, he most likely will be in his helmet for the next several months.

Jonah continues to do pretty well with his bottle, usually packing in 5-6 ounces of high calorie formula with every feeding. His solid feeding is ok but he will be assessed on the 22nd by an occupational therapist for his tongue thrusting. I just ordered some NUK brushes on a great Web site called beyondplay.com that has all kinds of therapy tools. Once they arrive I plan to start using the NUK brushes with both boys at solid eating time.

Noah is already picky with his solids, he liked bananas but doesn't care for peaches or pears. I hope he likes apple sauce! He will take a few bites and then refuse to open his mouth unless it is something he absolutely likes.

So that is the latest with our little men. We go to see Dr. Lee next Friday regarding Jonah's eyes and I am excited to meet with him. He is well educated and a thorough expert in the vision field plus he has excellent bed side manner and communicates well with parents. I hope he can answer a lot of questions for us. After this, as long as Dr. Lee agrees that Dr. Kelly in Madera is on track, we plan to take Jonah back to Madera on the 15th of October to meet with Dr. Kelly. At that time she might discuss another surgery.

We will keep you posted...stay tuned.

Thursday, September 4, 2008

Photos of the boys playing on the floor together. I love their matching overalls!

We love Grandpa!
Cute photos of the boys eating solids. Can you tell how much Jonah dislikes peas?

Wednesday, September 3, 2008

Just a quick email as I really need to attempt to get some sleep.

We finally have an appointment set up for the 19th of September to see Dr. Lee in Los Angeles regarding Jonah's vision issues. I am desperate to get some answers and he was so wonderful in being very thorough with us back when Jonah was in the NICU for his ROP surgery this past December. I am really worried about Jonah's vision and I know that this is affecting so many of his developmental issues as well. I hope our appointment with Dr. Lee will be helpful. Shane is planning to go with me as we both consider this a very important visit. Jonah's eye specialist in Fresno is already talking another surgery on his eyes in the next few months, especially because the Strabismus is still such an issue. I have mentioned before that the lack of pupil dilation has me worried also.

Noah officially cut his first two teeth! His bottom front two teeth have now come in and boy are we paying dearly for it. He continues to fight the bottle and it has come to us syringe feeding him a couple of ounces every few hours just to try and get something down him. We've upped the Benecalorie and started adding calories back in to his solids as this is the only thing he seems to take more regularly and with more will. I am worried he hasn't gained any weight at all but hopefully he hasn't lost any either...that is a real worry. My fingers are crossed and hopefully we'll get through this phase without him loosing any weight. I have a feeling that teething is going to be a nightmare with Noah. Hopefully we'll find a way around him not eating as much and maintain his weight.

Jonah still hasn't brought up any teeth yet, although I know his have to be coming. He continues to eat well from his bottle and is doing ok with solids. He of course hated beans and peas but is doing ok with sweet potatoes. He still thrusts his tongue a lot but that may take time and NUK brushing to change.

I'm continuing in my quest to have a more bright attitude about the future. I really am working toward being a positive person even in the face of all that challenges us as a family. My husband is by far the better example as he is unfailing in his belief that our life as a family is exactly as God intended and he never questions. I am working toward having a similar attitude as I know that these boys have fought and endured so much to be a part of this family and they did choose to come to this earth and have these bodies. They wanted so much to have a body and have this earthly experience that although they knew they would face trials the blessings of having a body here on earth by far were more important. It goes to show what valiant spirits they truly were.

I am grateful for the good support and advice from my father. He has been a constant in my life right now, reminding me that no matter the future God is great and good and he will bless us. He also reminds me that even if Jonah has his disabilities, this means he is such a pure and sweet spirit that his election will be made sure with God.

I love the gospel, I love the peace it brings to my life. I have always said that if I were to blog I would be honest about our experiences. I have mentioned the difficult time that I am going through right now. It is a very difficult time, one that has had very dark moments but I have surrounded myself with as many spiritual influences as I possibly can and I have found that my faith has increased, that my testimony has strengthened and that God has given me spiritual promptings regarding our relationship that I have long needed to have. I know for a long time I was not relying on the Lord as I should have, that my frustration and often anger with my circumstances were preventing me from seeing the greater blessings, the greater miracles.

I also know that God has not left me, that he is with me, loving me and helping me through this time in my life. I am grateful for the Priesthood, the power of the Priesthood. I have received some amazing, insightful and inspired blessings from both Shane and my father. The spirit has been strong during these blessings and all those involved have born witness that God loves this family dearly and loves these boys very much. Just this morning, I was having a difficult start to the day and feeling very discouraged but as I left Noah's physical therapy appointment I felt the words come over me, "I will lift this trial from thy shoulders..." and I felt at peace. Today has been wonderful because I have felt so at peace for the first time in a few weeks. I can't say that means that this experience has ended or that bumpy times aren't ahead but I can say that God touched me this morning and let me know that he was very aware of all I am going through and very aware of my fight to overcome the negative influences in my life. I felt God's reassurance that as with Job he would not forsake me. In reading of Job's experience, after Job proved himself to the Lord by enduring the most severe of trials the scriptures say that the Lord "blessed the latter end of Job more than his beginning" (Job 42:12). I know that if we can prove ourselves through our darkest of hours that God will bless us even more then we can imagine. I am grateful for this and I hope to keep this close to my heart as I face the road ahead.