Thursday, December 25, 2008
Fun photos of our day together. I also included a few photos of Christmas Eve and Shane's birthday celebration from the 22nd.
It is hard to believe that this time last year the boys had just been transferred to Childrens Los Angeles for ROP eye laser surgery. We spent their first Christmas in the NICU. How wonderful to be home in our own place this year with a bright Christmas tree and loving family. We are blessed that the boys have gained weight so well since coming home and they have avoided any new hospitalizations or illnesses.
We are grateful for the support and love of family this year. We would not have made it through several tough times without the support of our loved ones. We thank you all for all you continue to do.
We hope you enjoyed this beautiful day of Christmas and felt the Savior's love for us all.
Shane and Michelle
Sunday, December 21, 2008
Friday, December 19, 2008
I hope you enjoy the below photo of Jonah being snuggled by Grandma and the video of Noah playing patty cake. The video is a bit dark but hopefully you can see what a cutie he is!
Jonah now weighs over 19 pounds (19.5 to be exact) and is a chunky little guy. He is 28 inches long. Noah is still attempting to catch up, he is shy of 18 pounds and a bit over 26 inches. We just picked up "Yo Baby" to add to his diet and it is a high calorie yogurt (110 cal per 4 oz.) We hope he will catch up to his brother soon.
Jonah's MRI turned out to be a very, very long day. We showed up early as they asked but they ended up being an hour behind so we sat around until 1:30 waiting for the anesthesiologist. Thank goodness Jonah did well for the MRI.
After we headed down to meet with his neurosurgeon. This clinic was also behind and we waited another hour to get in to see his specialist. We reviewed the MRI. PVL was present (Periventricular Leukomalacia, which is damage and softening of the white matter of the inner part of the brain that transmits information between the nerve cells and spinal cord) which does put Jonah at a higher risk for a Cerebral Palsy diagnosis but this is nothing new to us. Yes, in some ways it means a closer step to a CP diagnosis as PVL puts infants at a very high risk for CP but we have known the high likelihood of this since Jonah's birth.
On a positive note, the neurologist noticed Jonah's developmental progress since his last visit so that was exciting to hear. Grandma Langston also commented that Jonah has made good progress since October developmentally.
We talked with Dr. Magram about the diagnosis of CP and his response was that generally he waits until the age of two and expected that it probably would be on his left side since he seems to struggle specifically with his left hand. He encouraged us to continue therapy but we had an interesting conversation about Jonah's orthotic helmet. I guess his experience has been that babies with hydrocephalus generally don't show a lot of improvement with orthotic helmets due to the fact that their heads generally grow a lot slower and by the time there is growth the bones have generally become to rigid or fused together so it is nearly impossible to reshape. I did tell his specialist that we were able to get rid of most of the Plagiocephaly in the back of Jonah's head (a malformation of the head or oblique slant to the main axis of the skull) and it has reshaped and now we are focusing on rounding it out on top and the sides so some improvement has already happened and we intend to keep trying. He didn't discourage us from continuing but just wanted us to know that Jonah's head will never completely reshape which we know. So that was definitely an interesting conversation. I already see an improvement in the shape of Jonah's head, we plan to keep at this for a few more months to see if we can't see any more improvement.Another fun happening, Jonah has started chattering even more and his new thing to do is say "Ba!" with great emphasis. We are happy at his verbal attempts as one can only imagine how difficult it must be to interpret the world around you without being able to see anyone's face clearly, so learning to speak is even more challenging with Jonah but he is trying!
So that is our current update. Grandma Langston and I got caught in a snow storm and where stuck in Valencia overnight Wednesday. We were not able to go over the Grape Vine until Thursday afternoon. So needless to say between our trip to Fresno, finishing our kitchen counter tops and our trip home from LAX this has been an interesting week!! Our kitchen counter tops are finally finished, we had the floor tile crew come today and do some touch up work. Now we have curtains left to hang and another overall cleaning needs to happen to the house, hopefully before Christmas.
Grandma and Grandpa Langston have been so helpful. I am so grateful they are here. Both boys just love to interact with both and get lots of love and kisses.
We hope to get an e-card made up for Christmas and out, I just need to find time to get pics of Jonah and put it together.
We love each of you. Thank you for your continuing support and prayers. Always remember Noah and Jonah as you pray because they need as many blessings from above as can be granted to continue to affect their ongoing development.
Love, Shane and Michelle
Sunday, December 14, 2008
The swallow studies on Thursday went well. Both boys are not having any issue with swallowing. Jonah does reflux a bit in to his nose but nothing serious. They actually asked if Jonah brings any formula up through his nose when taking his bottle and I said no but when he vomits he brings things up through his nose. Speaking of which, Jonah did NOT take well to the Barium. He had two huge throw ups while at our High Risk clinic. Of course both came up through his nose and he freaked out and started holding his breath and choking. I've unfortunately been through this enough to know what to do so I laid him quickly down on his side, suctioned his nose and spoke to him calmly to get him to settle down until the episode had passed. The nurses in the room where a bit taken back by the intensity of Jonah's throw up but in the end we had it handled and they later mentioned they were impressed with how well I handled the situation. I know it was meant well but in actuality I would rather not have to deal with this at all. It terrifies me every time that Jonah won't come out of it and I'll end up doing CPR like I almost had to do this past April when Jonah stopped breathing for several minutes after a nasty vomit. Thank goodness we have not been through that again since then.
The High Risk clinic was exactly what I expected. Noah is pretty much on track with his adjusted mile stones. He is crawling backward a few steps at a time and pulling himself forward, he is so close to crawling and starting to pulling himself up on things. We are almost there! To no surprise Jonah has delays, no surprise there but we continue onward with daily therapy to combat all his challenges.
Tuesday we have Jonah's MRI. I am a bit anxious about this and thank goodness Shane is taking the day off to come be with us as I don't know if the neurosurgeon will start speaking of Cerebral Palsy to us after the MRI. Poor Jonah, he will have to be sedated and then we head straight down to the Neurosurgery clinic to meet with his specialist. I also plan to speak to his eye specialist later this week to see what she sees in the MRI. I would like to know what is going on in the Occipital Lobe of the brain to know if Jonah's lack of vision is more serious then we know. Answers would be welcome, as difficult as they would be.
We are moving along with projects in our new home. We are finishing off replacing the tile counter tops in the kitchen and started putting up curtains tonight. We managed to get up Christmas lights outside and thank goodness I got our tree up early as we have been so busy with everything I'm not sure how I would have done it the past couple of weeks.
Thank you all for your love, support and prayers. We wish you a Merry Christmas in this holiday season.
Tuesday, December 9, 2008
Tomorrow we go to Fresno for a swallow study for Noah. Thursday we have the same study for Jonah and then both boys go to the High Risk Clinic. Next week we have Jonah's MRI and visit with his neurosurgeon. I am a bit anxious as I don't know what to expect from the MRI but I will make sure and post the results.
Wish us luck, I tried so hard to get both boys on the same day but was unsuccessful. So we have three trips to Fresno this month. Thank goodness Grandpa Langston is in town and helping. Noah is starting to be so demanding as he is getting more and more active. Things are just getting started when it comes to craziness in the Hanna house!
Monday, December 1, 2008
We had a wonderful Thanksgiving holiday and a gift exchange and putting up of the tree party with Shane's parents as they will be in Pennsylvania this year and my folks are coming down from Utah. Noah got a fun pony from Grandma and Grandpa Hanna and Jonah got a few light up toys to play with including a new activity center.
We are officially in our new home, there is still a lot to do but we are grateful to be finally moved in.
We hope your holiday was wonderful and wish you all a Merry Christmas!