Sunday, December 27, 2009

Disneyland here we come: 4 days and counting!
Christmas Day: the boys enjoyed opening their new gifts from Grandma and Grandpa Hanna. Noah's favorite toy is his new dancing/singing Elmo (quite a vocabulary that this little guy has!), he also got a ride along Matar truck (from Cars). Jonah got an amazing karaoke machine, he giggled and giggled over hearing his voice when using the microphone. I really think this will be a fun toy to encourage Jonah's speech. He has a long ways to go but loves to interact with us and tries very hard to mimic at least a consonant from words that we say which is wonderful. He now calls Grandma Hanna "amma." Noah is also using more words and even combining a few. A few days ago he declared, "No, mine!" when we took away a toy. Great progress Noah!

We are excited for Disneyland later this week. I have been reading up on their services available to disabled individuals. They really do go a long ways to accommodating ALL children, hurrah for Disney! I think the boys will have a wonderful time. Grandma and Grandpa Hanna were able to schedule a night at a timeshare within walking distance of the park so we can both walk to the park and enjoy the fireworks for New Year's Eve that evening. It will be a neat experience for everyone. It will be our first amusement park trip with Jonah and his new chair so wish us a good experience!

We hope all of you had a wonderful Christmas and will enjoy the New Year as it approaches this week.

Christmas Eve 2009: we enjoyed a family program which included hymns, a story from Grandpa Hanna, the reading of Christ's birth from Luke and an animated story of the nativity. After we all opened one gift. After the boys went to bed we enjoyed movies and games. It was a fun night and we enjoyed having Grandpa and Grandma Hanna.

Saturday, December 26, 2009

Just a quick posting. I plan to get photos on the blog soon of our holiday with Grandma and Grandpa Hanna.

It was a wonderful holiday. We enjoyed lots of giggles and laughter from the boys and that is what Christmas is really all about after all. I have always felt Christmas is about children and this year confirmed what a joy children are.

By far the favorite gifts this year where the dancing, talking Elmo for Noah and a pretty darn neat karaoke v-tech keyboard for Jonah (he gets quite a kick out of hearing his voice on the microphone!)

We had lots and lots of good food (sadly) and enjoyed playing lots of Wii. Grandpa Hanna received his Wii for Christmas and we have enjoyed it quite a lot the past 24 hours. We have played everything from bowling to golfing.

We are looking forward to Disneyland next week. I have heard good things from other parents who have children with special needs. Disneyland is supposed to be very accommodating for children with special needs so I hope Jonah will enjoy the experience.

Grandpa and Grandma where able to get a room at a local time share so we will be within walking distance to the park and able to see fireworks at midnight for New Year's. It will be a lot of fun!

Shane gets this next week off and we are grateful he will be home with us.

I will post Christmas photos soon. We hope each of you had a wonderful holiday!

Sunday, December 20, 2009

Just one more quick posting.

Although we have our challenges and the past few weeks have been worrisome with Jonah's poor eating habits, I had a peaceful moment recently that has stayed with me.

It came to me one day that the many, many prayers offered in behalf of our family have sustained us through the past two years. I know that I have said this before but this moment came to me so clearly that I know I was being reminded that we are being watched over.

So, to all of you who have prayed and continue to pray for our family I am sending you a sincere, heartfelt thank you. God bless and Merry Christmas.
Christmas Blessings! The boys looked so adorable today in their Christmas outfits.

We are happy that our Christmas season is winding down. It will be nice to relax and just enjoy family this week. Grandma and Grandpa Hanna are in town. We will have a fun week together and Tuesday will enjoy Shane's 35th birthday. (LOVE YOU SWEETHEART!)

Tomorrow we have the first test for Jonah. They will be doing an upper GI exam to see if he has developed any hernias or other issues from his August surgery that could be causing complications with his appetite. PLEASE pray for Jonah. Right now we dread meal time as we know it will mean holding Jonah down and usually syringe feeding him his formula to assure he gets in the right calories. NOT FUN.

We are praying for a miracle that we will find an answer to Jonah's feeding issues WITHOUT surgery and if it were the only thing I received this Christmas season, I would be the happiest woman on earth.

Merry Christmas!

Monday, December 14, 2009

I wish I had good news to share today.

We headed down to Fresno for three separate clinics at the hospital. First, we hit GI Clinic for both boys. This was probably our worst visit. For the first time EVER, Jonah weighs less then his brother. This is NOT good. We have been battling his horrible appetite ever since his fundoplication surgery in August. We started Periactin back in October in hopes it would boost his appetite but I am sad to say it has only helped marginally. I thought perhaps he had just hit a plateau but imagine my shock when they weighed him only to discover he had LOST weight and was thinner then Noah. It does not help that he has over an inch in height on Noah. This makes him look even more skinny. Noah did gain a bit of weight/height in the past couple of months. He is still small but because he is moving forward they are not yet worried about his progress. The first suggestion for Jonah was, "well...what about a g-tube?" Well, guess what. Have we NOT had this discussion before? I swear I feel that I am constantly repeating myself with the same doctors who see us every few months. G-tube is the LAST option, absolutely the last option. Jonah has had four abdominal surgeries and pursuing an additional surgery is not something I take lightly. Also, I do not want to take any possible developmental progress from Jonah and adding a G-tube will not help his possible ability to feed himself some day. Yes, there is a possibility we can pursue night feedings and still possibly maintain feeding during the day but I have a sinking feeling that if we pursue this option Jonah will have it for life and it will affect his ability to eat independently.

So, after discussing options the doctor agreed to pursue a couple of tests to see if the problem is related to his fundo. First, we will do an upper GI study to see if any hernias have developed due to the procedure. If nothing is found that could be causing issues we will then do an endoscopy to see if the fundo is correctly positioned. If this also shows nothing and in three months Jonah has not gained weight....they will start the discussion of G-tube.

I can definitely say I am stressed out. We have three months to get weight on Jonah. The GI doc did give us two cans of DuoCal and asked that we start adding a few scoops to everything he eats (Noah too). She said the DuoCal should be more easily digested then the Benecalorie that Noah was on for such a long time. I hope that both boys will tolerate the DuoCal and that it will help both gain weight. Also, for the first and only time, I hope that something will be found with these tests that can give us a definitive reason as to why Jonah has suddenly lost his appetite. There is no real reason for his weight loss other then something related to his fundo surgery from August.

After GI we went to see the surgeon who did Jonah's fundo and he basically agreed with GI and even made the frustrating comment that he really did not understand what was going on with Jonah. He said that loss of appetite is not a common risk of a fundoplication and he certainly does not understand why this has become an issue for Jonah.

Please, pray for Jonah. Pray for all of us. We really need these next three months to make the difference. We are trying so hard and have fought so much and given so much time and effort toward preventing him from ending up with a feeding tube.

Jonah also saw his eye specialist. Everything is fine from his November surgery. His specialist felt that his eyes showed improvement and was pleased with how well he seems to be using both eyes since the procedure.

After, we delivered hygiene kits that our church ward Relief Society assembled to the Bishop's Storehouse in Fresno to be distributed to those in need. We finally got on the road toward home a bit after 1:00 pm.

It was definitely a long day. Noah has much less tolerance for these visits. He does not handle having to be in one place without roaming around freely well AT ALL. In fact, I think the GI doc's comment about Noah's behavior today was, "Well...he certainly is wild isn't he?" Yeah, he is. He is a typical, high energy, in to everything two year old and spends only a few seconds on any one given thing.

So I am glad to be home. I am going to bed and then we will start the process again tomorrow. Oh! We also got Jonah transitioned to a big boy bed. He is now officially downstairs in his own room with his own set of big boy furniture. We set up the side rail tonight and washed his quilt and sheets. Tomorrow will be his first night in his own room. Such a big step! Eventually in the coming months we will transition Noah too. Right now, he would be much too big of a trouble maker to take him out of his crib.

That is the latest in the Hanna home. We hope you are enjoying the Christmas season. We love Christmas here in our home.

God bless everyone. Please keep our family in your prayers.

Friday, December 11, 2009

The war is on.

These kids and their constant up and down eating habits are definitely wearing on the nerves. =)

Do you like the photos that show what the boys look like after eating? Today, Noah was in the mood to slap the spoon away and fling any food that got near his mouth all over the place. Fun stuff. Jonah loves to move his head everywhere in an attempt to avoid being fed and if we try and hold his head in place we get lots of screaming. We have to weigh which is worse, the screaming or a messy child once feeding is done (I will take the mess any day).

This IS worth the sacrifice. I keep telling myself that every day my boys are spared a feeding tube is a blessing and I HAVE to move forward with faith that some day it will pay off!

Wednesday, December 9, 2009

Photos from the Polar Express party at the Richardson Center today. The boys along with Allie Hanson and mom, Brooke, had a wonderful time! They got to meet Santa, ride a train, do all kinds of crafts, listen to the conductor of the Polar Express share his story and go home with a bag of treats. Plus they were able to wear their Christmas jammies.

What fun!

I know the power of prayer and I know how much each of you has helped us in our journey with Noah and Jonah, so because of this I am asking that you keep a little boy named Ashton in your prayers.

He is 4 years old and has Cerebral Palsy as well as severe respiratory issues. Right now he is once more been hospitalized up in Canada and is not doing well. Last night alone he flat lined twice and required CPR to resuscitate. The Mother is desperate for prayers and support and wants her son home for Christmas.

Please remember sweet Ashton in your prayers today. We are all in this journey of life together and God hears all prayers.

Thank you friends.

Tuesday, December 8, 2009

Wanted to quickly share great news! Today I was talking to Noah's occupational therapist and they evaluated Noah to see if he needs to renew his OT visits. Well...he is doing everything he should for his "actual" age, not even adjusted! Hurrah! This was a mixed bag as I am happy that Noah is up to his age level for OT but this also means that insurance will most likely not renew future visits. I would rather he be followed until preschool to assure he is doing everything that he should be. BUT we will focus on the positive! Awesome job baby boy!
Adorable bath time babies! I especially love the photo of Shane with the boys. Bath time is Daddy's time and the boys love playing with their Dad.

Saturday, December 5, 2009

Santa Shane! Shane was asked a week ago to be Santa for our former church ward, Silver Creek. He had a wonderful time tonight. We got out after for dinner and this was our date night tonight. Shane loved it so much he thought of buying his own suit for future use and the most requested toy was...marbles! How funny!

Thursday, December 3, 2009

Thank you for a kind friend who passed this poem on to me:


A meeting was held quite far from Earth.

It was time again for another birth.

Said the Angels to the Lord above --

"This special child will need much love.

"Her progress may be very slow,

"Accomplishment she may not show.

"And she'll require extra care

"From the folks she meets down there.

"She may not run or laugh or play,

"Her thoughts may seem quite far away.

"So many times she will be labeled

"'different,' 'helpless' and disabled.

"So, let's be careful where she's sent.

"We want her life to be content.

"Please, Lord, find the parents who

"Will do a special job for you.

"They will not realize right away

"The leading role they are asked to play.

"But with this child sent from above

"Comes stronger faith, and richer love.

"And soon they'll know the privilege given

"In caring for their gift from heaven.

"Their precious charge, so meek and mild

"Is heaven's very special child."

Wednesday, December 2, 2009

This will not be a usual posting. Instead, I would like to take some time today to be honest and forthright with my feelings. I believe and hope that in what I post I am helping others know how to best support other families and friends who are dealing with extreme health challenges in their own lives.

I am exhausted of people telling me that I was given sick/disabled children because I am capable of handling the situation better then they would be able to do. The truth is, God does not give us trials because we are "prepared" but because he wants us to "learn." God does not give unhealthy children to one couple and perfect, healthy children to the rest. This is NOT God's plan. Instead, God has a greater plan in mind. He wants us to reach our full potential and for some of us (for reasons we may not ever fully understand in this life) we are given children with disabilities and health challenges. What does this teach us? This teaches us compassion, patience, Christ-like love and what the true meaning of life really is. For me, it has also taught me about the ugly side to myself, the side that struggles day to day, the side that sometimes questions the heavens, and the side that, yes in some awful moments, sees my children as those around me would see disabled instead of as gifts from God. Never in my life have I become more close to my weaknesses than through the challenges I have experienced in the past three years. Yet, is this not part of God's purpose?

"And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." (Book of Mormon, Ether 12:27)

I am still standing in the refiner's fire. My imperfections are probably too noticeable to others, even in my sharing my feelings today I am exposing my imperfect thought processes. However, I hope that perhaps in doing so, I will touch someone else, help another understand, and give compassion to him who is seeking it.

I want to live my life in a way that my Heavenly Father would be proud. I have a long road to finish and many, many diversions to my path that I must overcome. I do know, even in my most difficult of moments, that God will stand by me and not leave me. He will guide me through this process and I hope and pray that in the end I will find myself that much closer to his spirit and companionship.

Do I understand why Noah and Jonah were born so early? Do others look at them as being a burden on society, especially Jonah with his disabilities? No I do not always understand and yes others do comment and look at them as being liabilities. The truth is however, that God's plan is not designed by men. God has the ultimate understanding of why my boys started their mission so early and why Jonah has his disabilities. In fact, I feel prompted to share part of Jonah's baby blessing.

"Jonah, your Heavenly Father loves you. He has shown that love with the many blessings that He has already given you. He has watched over you in your trials and tribulations. He has guided your parents and loved ones. He has guided your doctors and nurses. He will continue to guide us so we will raise you unto the Lord to be a true child of God. Heavenly Father has a wondrous and amazing life planned for you; a life with service to your fellow men and God, with many blessings and responsibilities."

When I read the blessings of my boys I am reminded of their divine heritage and of their divine mission. Although I do not have a perfect knowledge as to why they must struggle so, I know that God does love them and that they are fulfilling their individual earthly missions.

So, dear friends, count your blessings in life and support those of us who are still amid the "learning" process which places us in the presence of trials. And if God calls you to a similar path, realize that it is for your growth and well being.

"Ask not for whom the bell tolls, for it tolls for thee." John Donne

Tuesday, December 1, 2009

Well, our first week without Grandpa is off to a crazy start.

Thanksgiving was wonderful and we thoroughly enjoyed having Grandma and Grandpa Langston here. We were all sick last week. I started to come down with what the boys have had last Saturday afternoon.

Monday morning, Jonah woke up sounding awful. Both Noah and Jonah finished their antibiotics on Saturday. Jonah was having awful coughing fits and he started acting strangely in that he had cold sweats, was using a loud, unusual cry and his body was shaky. His strabismus was also out of control (rapid eye movement) plus his heart rate was in the 180's. I really thought he was having another seizure. I called the neurosurgeon and pediatrician and we made the decision to get Jonah immediately on oxygen and down to Madera Children's Hospital. We went in to the ER and were immediately seen. They did not feel there was enough evidence to support having a seizure but ran other blood work and a chest x-ray to see about pneumonia. Everything came back fine but to be safe we also did a CT scan to make sure his shunt was stable. After an exhausting eight hours we were finally let go. Jonah was so worn out yesterday, he literally slept in my arms all day while in the ER and was so pale. He definitely was out of sorts and I am still not convinced that he did not have a mild seizure yesterday morning.

We made it home last night and were so tired that both Jonah and I went to bed early.

Shane has been blessed enough to work from home yesterday and today so he stayed home with Noah and I plan to rest some today as I am still battling this ridiculous cold. The worst part is how exhausted you feel when sick with whatever bug it is that I am carrying around.

We are at least grateful that Jonah was not ill enough to be hospitalized. He does appear to be feeling much better today and we are thankful.

Thank you everyone for your prayers and well wishes and for remembering us yesterday. We are grateful for everyone's ongoing support.

God bless everyone during this holiday season!