Saturday, October 31, 2009

Happy Halloween everyone!

We enjoyed a fun pot luck and trunk o' treat tonight with our church ward. Shane and I went all 60's/70's and the boys dressed up like pirates, even Grandpa wore a Dr. Seuss hat. For those of you wondering what I would ever look like as a blond this it but I'm happy to say I can't wait to return to being a brunette!

Monday, October 26, 2009

Photos from Blind Babies Harvest Festival. As I said below, Jonah was not in the best of moods so unfortunately we do not have as many photos of him as I would like. Noah LOVED the tractor (he is in love with all cars, trucks, etc.).

We are off to a very busy start here in the Hanna house this week.

Today alone we had therapy, school and I volunteered for Little Feet Repeats. It was a long day to say the least.

This past Friday we heard from the GI clinic. The doctor that has been following the boys was concerned about Jonah. We discussed what has been going on and she decided we should repeat his gastric emptying delay study to see if he is still suffering from a lot of swelling due to the surgery and scar tissue removal in August. The doctor did say some kids take a few months to really heal from the procedure. She said if the swelling was significant she might recommend a nasal tube to augment his feeding until he is able to eat more adequately. PLEASE pray that we do not go down this road. I told the doctor this HAS to be the last choice. I talked to her about Periactin and she said that if the results show things are healing then the assumption will be that he needs medication to boost his appetite and we can try the Periactin. Even if the study finds swelling I may still ask to try the Periactin before the nasal tube. The doctor wanted to know why with Jonah's former results the surgeon did NOT do the pyloroplasty. I told her the surgeon's philosphy is the procedure is more harmful then helpful and he personally does not recommend nor like to perform the surgery. Apparently Jonah's GI doctor was not happy with this. What can I say? They both have varying opinions and we put trust in the surgeon's decision to not perform the pyloroplasty.

Right now, friends and family, we need your prayers! Please pray that we find answers that do not require any sort of feeding tube. We have not fought for two years to get to the point of giving up. It has been exhausting, I cannot lie, we are to the point of syringe feeding Jonah his sippy cup or supplementing with solids only and it can be so frustrating for both of us but I am not ready to put Jonah through any more than is necessary. So pray for both Jonah and I that we can make it through this and get answers quickly.

This week will continue to be busy with Little Feet Repeats, Halloween carnival, school, therapy, and a trunk o' treat for church plus the study in Madera Thursday. Phew. That was a long sentence to right and a bit stressful to think about but there will be a lot of fun too.

I will post photos of the Blind Babies harvest festival we went to Saturday. After all our driving, Jonah was in an awful mood so most of the photos are of Noah. It was a bit on the hot side (in the 80's) and being outside when it is hot is not Jonah's cup of tea.

I will keep everyone posted and let you know when we find out more about Jonah.

Wednesday, October 21, 2009

The day is finally ending at 10:00 pm. I am completely exhausted and after this posting I am going straight to bed because tomorrow it starts all over again and early.

Dr. Tamura, Jonah's fundoplication surgeon, wants us to start him back on arithromycin to see if it helps boost his appetite. He thinks that maybe Jonah is still suffering from GED (gastric emptying delay). Other then that, he said that unfortunately it will take time for Jonah's stomach to grow to a point where it can accomodate more volume so we just have to stick with getting as many calories in him as possible. I am considering adding Benecalorie or olive oil in his Kids Essentials to give him an extra 100 calories with each meal. He has not lost weight but he has not gained either in the past two months. Not good. He needs to be continuing to grow so hopefully we will find a formula that will work. Dr. Tamura also arranged for the GI clinic to call and arrange a time to see Jonah because of my concerns and he wants to see us back in a month.

Now, as far as the appointment with Dr. Kelly goes....Jonah will have surgery #11 or 12 (at this point it is past 10 and I am losing count) on November 9th. Dr. Kelly noticed today that his left eye is resting lower then his right and he seems to not really be using his left eye. She wants to correct this with the hopes that the change will force him to use both eyes together. When she asked me if I had noticed the difference in his eyes I said, yes. I have noticed before that his left eye focuses lower then his right but I figured that when Dr. Kelly felt the timing was right she would correct things and it looks like that time has arrived.

So we are scheduling the surgery for around the 9th. Shane would like it earlier because he starts teaching night classes for the University of Phoenix so we'll see what I can do tomorrow with scheduling. We want to do the surgery with Grandpa in town so that we can both go down with Jonah and Grandpa can stay behind with Noah.

That is the udpate as of today. I sure hope that this medication helps Jonah and hopefully adding extra calories to his sippy cup will help him start putting on weight too. He is still hanging out around 23 pounds 5 ounces.

Well, I am exhausted so for now I will end this post but will follow up with more later. This weekend we have the Harvest Festival with Blind Babies Foundation. It will be fun to get out and enjoy the time there plus we will see Kristi Spaite with BBF. She continues to be a great help to us.

Tuesday, October 20, 2009

A preview of the boys Halloween costumes.

We had our play group today at the local pumpkin patch and let the kids wear their costumes because we are doing a party for just the adults Friday. I LOVE the top photo of Jonah and of course Noah is adorable too. My camera died before I got any good group photos so I included an individual shot of Preston (Tracy's son) and Allie and Noah (Allie is Brooke's daughter). For other photos I'll have to rely on my friend Tracy. She got lots of great photos with her professional Canon camera. The kids had fun!

We did not get results from last week's EEG. We have to wait to receive an official report in the mail. After research and conversations with a friend back east who has epilepsy I feel that we really will not learn much from the EEG. Unfortunately, it seems we are in a situation where we will just have to wait things out and see if a seizure happens again.

Other then crazy busy, things are good. The boys went back to school last Thursday and this Monday. They really enjoy their time there and I think it is good for them both. Noah needs to work on his vocabulary so his class is really challenging his speech skills, which is great! Jonah enjoys singing time and they work with him in a stander they have there at the school.

This week has been and will continue to be very busy.

I have been worried for some time about Jonah's poor eating. I do not have a scale at home for the boys (which might be a good thing as I would drive myself crazy with it) but it seems to me that Jonah might have lost a bit of weight. He has not been weighed in some time and I am to the point where two months post surgery, we should be seeing his appetite return to normal. Plus, his gagging is worse and his adversion to textures is also worse. I finally broke down Monday and called his surgeon. His nurse said that the gagging should not have continued to worsen and the fact that his appetite is still poor may mean that the nissen is too tight. We will meet with the surgeon tomorrow morning to see what his feelings are. They may need to dilate the tube down his esophagus if they do decide that things need changing. After this visit, we will visit his eye specialist. I continue to worry about Jonah's vision too. Some days I feel like he sees absolutely nothing and other days he seems to better interpret his environment. His prescription has not been changed in a year so tomorrow I plan to ask what the plan is with this. He is still awful about keeping his glasses on. I don't know if he will ever fully adjust to using them. This also leads me to believe that perhaps they may not be helping as much as we would like, I will have to ask Dr. Kelly. I know they do help some, for sure...but the question is how much.

So tomorrow is busy, I rush home to go to a youth activity for our church and then Thursday is therapy and school in the morning. I still have a Sunday lesson to plan for our young women's group and I have to get ready for the Little Feet Repeats consignment sale next week. My clothes are in the database, I just need to print tags and organize everything. We are selling quite a bit so that is always good. I am volunteering this time around to up the return I get on my sales. We also have a fun party Friday night with friends (just adults--hoorah!) to celebrate Halloween. I am excited.

The next two weeks are going to be busy, busy. But I wouldn't have it any other way. Grandpa and I can't believe how quickly this month has gone. It will be November soon, hard to believe!

Enjoy the photos above. We had our play group at a local pumpkin patch today. Jonah debuted his Kid Cart today. It seemed to go well. I have included a photo above of him riding in his new wheels.

Tuesday, October 13, 2009

Just a quick posting. Tonight we head down to Madera. We were able to get a room in the Ronald McDonald house next to the children's hospital. Jonah has his EEG (Electroencephalography) tomorrow. This test will last for two hours and will measure Jonah's brain activity to see if we can find indications of a seizure. The worst part will definitely be the preparation. We have to keep him up until 10:00 pm and get him up at 5:00 am. He has to be very drowsy for the test as they want both waking and sleeping measurements. I am glad we were able to get a room with RMH as this is a difficult time of year with the RSV season.

I will post more information when I have it.

Saturday, October 10, 2009

We had a wonderful family day today.

We decided this year to take the boys to a local farm to enjoy some pumpkin picking and harvest fun. I have never been and really enjoyed our trip. Murray Family Farms is locally owned and they grow organic produce. The boys enjoyed face painting, a corn play pool (Jonah's favorite!), corn maze, games, hay ride and pumpkin picking. We bought tasty goodies including home made fudge, blackberry pie and dried fruit. The Haney family joined us and brought their darling one-year-old daughter, Haylee, to play with the boys. I really admire this family and appreciate their friendship. They are adopting Haylee and have been waiting for over a year for things to be finalized. I have watched Shirley take this baby straight from the hospital and nurture and love her like her own. She is a lucky little girl. So we enjoyed their company and had a wonderful trip. Definitely something to do again next year! They allow you to come and pick produce year round so we may have to go back in the spring and pick berries. I like that everything is organic.

Tomorrow is fast Sunday for our church. I am fasting that Jonah will start regaining his apetite. I worry so much because he has not been eating well ever since his fundoplication surgery. While we are grateful for the end in vomiting, I am worried about his lack of appetite. I never thought we'd go backward with eating but I find myself having to fight him on every meal and I have not come this far to have Jonah end up with a feeding tube. So for those of you willing to fast, will you keep Jonah in your prayers?

We are so grateful to have Grandpa here. It is always a lift to our spirits. He is such a positive support and really gives us so much love. We are lucky to have him here. We also miss Grandma who flew home on Friday.

It is late and I must get to bed, so I will end this post for now.

Friday, October 9, 2009

Well, it has been a roller coaster of a week.

Our trip to Las Vegas was fairly good. I did not sleep well, it has been a few years since we have been and I think I remembered why. =) There is so much "riff raff" that it makes it hard for me to enjoy the overall experience. I did not sleep well because I had a partial migraine due to all the smoke in the streets, casinos, etc. BUT the show (Phantom) was absolutely amazing. If any of you have a desire to see it, the Las Vegas production is one of a kind. I have seen it in both Los Angeles and a couple of times in Utah but the Las Vegas stage was incredible. I was told it was stunning because they had custom made the stage just for this production and it was. The special effects, music and acting were all phenomenal. I was able to also get some great winter clothes for the boys at their excellent outlet malls. In the end though, I was glad to come home to my own bed.

Tuesday on our way home I called Grandpa and he was worried about Jonah. He said that mid-afternoon he started acting like he was having a seizure and it took some time for him to come out of things. My Dad did say that it was not a full blown seizure (he is a retired special educator) but that it appeared to have characteristics of a seizure. When we got home he looked pale and exhausted. He pretty much slept for most the rest of the day and really was just not himself. I was absolutely terrified and very upset but the neurosurgeon's office had already closed for the day so we kept Jonah with us overnight and called first thing in the morning. When I spoke with the neurosurgeon he ordered a CT Scan but they were not able to get us in until yesterday. The good news is that the scan was stable and the neurosurgeon did not see any change to his ventricles. But, because of what I described to the neurosurgeon that Jonah had done he was still concerned that Jonah had experienced a small seizure so he wanted an EEG. They were not able to schedule us yesterday (unfortunately) so I have to wait and hear from Radiology next week to schedule that appointment. Jonah goes to see his eye specialist on the 21st so I am going to try and schedule his EEG before that appointment in the morning. We are grateful that things appear to be stable but a bit frustrated as to what really happened. Hopefully we will know with time.

More good news, Grandpa and Grandma Langston have been with us all week. Grandma goes home today and we are all packing in the car and driving her to Burbank. Grandpa is staying through Thanksgiving and we welcome the help! It is wonderful to have the support and the boys love having Grandpa around.

We are grateful that the boys celebrated their second birthday this week and we are grateful that the boys have grown in this past year. We hope the upcoming year will be full of blessings and health so that the boys may make progress with their individual goals. Thanks everyone for your well wishes and support.

Wednesday, October 7, 2009

Happy Birthday Noah and Jonah!

It is hard to believe that today is your second birthday. We had a small group of friends and family over to the Westdale Park and the boys enjoyed demolishing their polar bear cakes. I think we had more fun watching them make a mess of everything! The boys were spoiled with gifts from both friends and family.

We LOVED the t-shirts from the Lawrence family in Georgia. Amanda is a dear friend of mine whose son was also born at 24 weeks. She found these t-shirts that say "I am Two...You Have Been Warned!" Ha ha ha! The boys wore them all day and had lots of compliments. Amanda also remembered me and got a t-shirt that says, "I am Raising a Child With Special Needs...What is Your Superpower?" LOVE IT! She also sent the best, colorful lion and monkey stuffed animals. Grandpa brought with him lots of fun cars and dinosaurs for the boys plus several religious cartoon DVD's that we had asked for so the boys have something religious and fun to watch on Sundays.

It was a good day and I am glad the boys enjoyed themselves tonight. Thanks to family and friends for coming!

Saturday, October 3, 2009

Shane and I are so excited for Monday night! We found discount tickets for Phantom of the Opera at the Venetian Hotel in Las Vegas. Shane loves Broadway but has NEVER seen Phantom (which I cannot believe). So we are looking forward to our quick but fun trip together, starting tomorrow afternoon. During Shane's seminar Monday I plan to hit their fabulous outlets to look for some winter outfits for the boys for their upcoming birthday.

Thanks to everyone that voted for which cake to make. Obviously Panda Bear is the pick!!!
Welcome Grandpa and Grandma Langston! We are so happy to have you here!! Both arrived today from Burbank. We are excited to see them and they are thrilled to be with us and the boys.

You can just see this word forming on Noah's lips when I caught him playing in the dishwasher. NOTHING escapes the inspection of our little future engineer (much to my dismay). Shane found out how much he loved the laundry basket on Thursday (turn your back for a second and you'll find out just what Noah can get in to).

I love these photos of Grandma playing with Jonah and his light box. We just got these transparency stories to read to Jonah on his light box so he can see the images. We bought them from Light Bright Books for his birthday. Grandma had fun reading them with Jonah tonight.