Thursday, February 26, 2009

The infant specialist from the school district came today. She found some great light sticks for Jonah from Costco. He just loves these! Talk about a great find!



I love these photos of Noah. He loves to put his stuffed animals in Jonah's Wingbo swing. He also loves being "King of the toys" as you see in the photo where he has dumped everything in his toy basket out around him.



Cute photo of Grandpa playing with the boys.

Friday, February 20, 2009

Today we drove Grandpa up to Kernville. We walked around the empty Antique shops (I planned it that way as we had the boys with us) and had an early dinner at a local Italian restaurant. After, I dropped Grandpa off at the Kern River Inn Bed & Breakfast (photo below of cottage) to enjoy a night all to himself. After all, Grandpa deserves a break too!

Wednesday, February 18, 2009

Just a quick posting. We met with Dr. Purdy this morning. After examining both boys he did say he see enamel damage due to all their meds, prematurity, etc. At this point he did not notice any decay so he said we'll check again in six months. He said Jonah is at most risk for needing caps on his teeth because his teeth are worse off but Noah may need caps too. So for now we are to watch and make sure we don't notice anything worsening and plan to see the doctor again in six months.

Tuesday, February 17, 2009

New glasses! Jonah is adjusting to his glasses which we finally got today. He seemed to take well at first but he is starting to reach his fingers up and try to pull them off. They may be a bit loose but we're giving it the night to see how he does.

Tomorrow we go to the dental specialist for both boys. I will post what he says about the situation with their teeth.

My dad and I have a cake decorating class tonight. It will be nice to get out and take a break! Dad has the boys.

Monday, February 16, 2009

Photos of beautiful San Francisco (I included one of me in front of a Ghandi statue as he is someone who I greatly admire).





Saturday, February 14, 2009

Although I plan to post quickly about San Francisco I think the most exciting thing that happened today is that my dad said Jonah has been saying "Mom" all afternoon and evening. He first said it Friday and Shane and I were in shock. Granted, we know he isn't quite aware of the meaning but how exciting nonetheless!

If I had more time I would put together some poetry (I love to write) about our lovely day in San Francisco but these are a few thoughts I collected, or things noticed that brought thoughts to me:

Farmer Market, fresh fruit, flowers, preserves
Smell of incense, cold wind and salty bay water
Music, all kinds, violins at the pier, an old gentleman playing clarinet and selling jazz
World Awareness: two men speak at curbside about starvation in Africa and the epidemic it is as if it were normal conversation, the same as good morning and how are you?
Rolling streets and sidewalks, laid out as if by laziness or maybe just a convenient plan that required less work, exhausting to climb
The Golden Gate Bridge: Absolute majesty
Lonely Alcatraz, empty, void and full of stories I care not to know
Disappointment and exploitation: two streets devoted to strip clubs, such a sore in the middle of this beautiful city, why?
Beautiful people everywhere, young people, young couples lost in endless possibilities with undefined futures
Oceanside, open waves of blue
Rain: stop and go, sometimes strong and other times gentle

What a beautiful day and what a beautiful city. I will post photos later.

Thursday, February 12, 2009

Tomorrow we leave for San Francisco after dinner but tonight I am feeling sentimental and wanted to post once more before the weekend.

I have been trying to do meditative practices at bed time to think through all that is happening in our lives, especially with the boys and tonight I could not help but think of all the wonderful things they are doing and what blessings they are to those around them. I am trying to focus on the positive and celebrate the many things that they are doing vs. all that may not yet be happening.

I ran across the blog of a fellow micro-preemie mom (also has twin boys) and I really appreciated that she takes the time to periodically write notes to her sons on her site to let them know her feelings for them at that time. I felt inspired tonight to do something similar.

Dear Jonah,

I am so proud of you. Just today I was holding you and you were trying very hard to hold yourself upright so you could see all that was happening around you. You have such an infectious little smile. It truly warms the heart of many. You have just recently started babbling and trying so very hard to mimick what we say to you. You are such a happy, loving child. I could not help but think tonight of what a blessing you are to those around you, especially our family. You teach us every day the importance of loving life and the simple things, of smiling and of giving every day a chance to be good. You have experienced more pain and surgeries then most will ever know in an entire lifetime, your trials have been unimaginable to many yet every morning you greet us with a smile, a beautiful laugh and an excitement to start a new day. You do not let your challenges overcome you, yes, I can see you struggle to use your little body and can see the frustration at times for not having the capacity to easily do the things that so many take for granted. Even so, it does not stop you from enjoying the small and pure things that life has to offer. I can only hope to live up to your great example. I know God has given you a choice spirit so that you can teach others the importance of compassion and empathy, especially in a world were both are so lacking. I wish I could take away the apathy and potential cruelty that others may throw your way but I know God loves you and I and that he will protect us both. I also know that in the end even the hardest of people will learn and know that within your imperfect body lies the most virtuous and innocent of souls. Yes, I do believe that if not in the moment at some time in life even those that do not understand will come to know that you and others with similar disabilities have the greatest of all gifts and that is the purity that only comes with being close to the spirit of God at all times. I pray for you always as well as myself that I will be able to be the Mother that you will need and that I will be close to God at all times so that I can see the miracles that will take place as you go through life.

I will love you always,

Your mother, Michelle


To my vivacious, beautiful son Noah,

Every day I see you growing. Your beautiful brown eyes which remind me of your daddy look so curiously at the world around and your face brightens at the newness of all that surrounds you. I truly think I have never felt such joy then when I see you discover something for the first time. Your first, shaky steps with me walking behind you thrilled my heart more then any other treasure in the world. Your constant exclamations to the world by way of your endless chatter fill our home with such spirit that I think our lives must have been so empty before you came. You are ever aware of your brother and love him. He makes you laugh and you are always by his side. I know you both have a special bond that only two babies who have gone through such much can have. I already sense that you will be a great protector of your brother through life. He will be blessed to be your brother. Your special spirit is three times the size of your little body and although small for your age, your determination to be into and a part of everything pushes aside anything standing in your way. You love people, you are curious and watchful but quick to smile and engage. I sense that you will be a great leader and people will look up to you and that you will have a great love for those in your life. I love you and love this time in your life, every day is a new adventure where you find something new to conquer or enjoy.

I look forward to seeing all the great things that the future holds for you.

My heart is with you,

Your mother, Michelle
Poor Jonah is starting another ear infection! I was absolutely shocked as I thought perhaps maybe Noah was starting up with another. He has been fussy the past two nights and last night he woke up several times throughout the night fussing but Noah's ears checked out fine. So Jonah started with a short 5-day course of antibiotics and goes in for another check-up next week. Noah's infection is both yeast as well as eczema. So we are changing bath soup to a mild Dove bar soap and starting Noah on a Nyastatin and hydrocortisone cream mix. Hopefully in a week we'll finally see things clear up. Bless his heart.

So far San Francisco is still on! Shane will still have to take it easy so not a lot of walking will be possible but it should still be fun.

Happy Valentine's Day to everyone!

Wednesday, February 11, 2009

I am almost afraid to post this as I feel like tomorrow everything could change but for Valentine's Shane found a wonderful hotel deal in San Francisco! I am so excited as I have only ever flown through the area, never stayed and although the forecast calls for rain we will take our chances!

Even tonight Jonah was being abnormally fussy and I was thinking, "Please no, please don't get sick or have any problem that may prevent our nice little get away (hopefully that doesn't sound too selfish)." Hopefully I am just being paranoid. My sweet father has agreed to watch the boys from Friday evening until Sunday afternoon while we go enjoy ourselves. Seriously, who could ask for a better Grandpa and friend? I can definitely say we would not make it without him. He has been such a help and important part of Noah and Jonah's lives. They are lucky to call him Grandpa. Also, Grandma Hanna left today and we want her to know how much she will be missed. She also has sacrificed so much to help out with our family and flew down here last minute to help with the boys so Shane could rest. We are blessed with good family!

This week Jonah has continued to have a few more vomiting episodes then I would like but I really think his allergies are acting up and tomorrow both boys go in for their Synergis shots so the doctor is also going to take a look at Jonah and discuss maybe changing the Tavist he is on. Noah's yeast infection has STILL not cleared up (after over a month and two different ointments plus oral Nyastatin) so that will be reviewed too. The dental appointment was put off as we just switched insurances and Aetna forgot to get my name as well as the boys added to the policy (nice). We found out when the specialist's office called today to say that the insurance was saying neither of the boys was showing coverage. Fun, fun. So that appointment has been delayed until they get their paperwork straightened out but hopefully we'll get both in within the next week.

For now, I am signing off and dreaming of this weekend in San Francisco.................

Tuesday, February 10, 2009

More video of our family party last night...
video
Noah and Jonah enjoying their cupcakes for our Valentine's Family Home Evening.







Previews of Jonah's cute glasses (minus the decals of course). Very cute!
Well, it has definitely been one of those days already (smile).

We took Noah in this morning for an occupational therapy assessment. He did well, testing close to his adjusted age of 1 year and a few weeks (I think his average was 11 months). We are going to start him once a week so he can hopefully move on to his actual age and start achieving that group of milestones. Toward the end of Noah's eval Jonah decided to throw up and of course it was one of his violent rounds (I swear he saves these for public only). Jonah is bringing in two eye teeth at once and his drooling has caused more morning throw ups lately. I knew it was coming because I can recognize his coughing before he brings something up so I got him down on his side to the mat. When it did come up it was nasty and clogged up his nose which always sends him in to spasms. Unfortunately, if you haven't been through one of his spells it is quite scary. This particular therapist plus a new volunteer had never seen Jonah throw up so they were panicking. To make matters worse Jonah was taking awhile to come out of it. He was crying intermittently so I knew that he was getting air but he always gets terrified each time he throws up through his nose. After much suctioning and reassuring he pulled through and was back to himself, tired and shaken but ok. Phew! What a start to a day!

In other Hanna twin news, we are taking both boys to get their teeth looked at by a pediatric specialist in our area this Thursday morning. I have been fretting about the state of their teeth, especially as Jonah's are looking really bad (yellowed and very thin). I spoke with his secretary this morning and explained their history, she said no sedation before age two so Noah's exam could be interesting (to say the least). I am desperate to get things started as if there is any decay going on we have to get caps or something protective going soon. She did mention we may have to be referred to UCLA. Fun, fun.

In better news...Shane is recovering and feeling better. He can lift the boys a bit more but he can't over do things still, laughing last night made his stomach sore so he is still coming through things. Jonah has added a few new words to his repertoire including "Da!" Noah is pretty much saying "Baaabeee! (baby)" without really understanding what it means, also "Meee" is another favorite (yes, it is most funny when battling out his eating sessions and he shoves the spoon away and says "Meeee" as if to say, hey...this is all about me and you aren't making me do a darn thing that I don't want to do!)

Grandma Hanna is in town and helping out around the house. Extra hands are always appreciated. Grandpa Langston and I are taking a cake class together so today we have been making cakes to work on tonight. It has been a fun thing to do together with him plus my best friend Brooke.

The sun is out today and I am hoping the rain is finally going away (we've had it off and on since Friday).

We also had a fun FHE last night and the boys got to make messes and enjoy their own Valentine's cupcakes (photos to come) while the rest of us ate a few for ourselves and decorated the other few dozen for the therapy place that works with the boys on a daily basis.

All in all, another crazy day. But to us, crazy is normal, so maybe I should just say...another normal day in the Hanna house and end this post right here!

Stay tuned for more adventures...

Thursday, February 5, 2009

We have added a new word to our family dictionary: appendicitis.

Yes, indeed. Wednesday night Shane started with what he thought was indigestion, by 2:00 in the morning it had become so severe he was lying on the stairs when I came out of the bedroom to check on him because he didn't want to climb up them to get back in to bed.

My husband isn't one to complain about pain but finding him like that plus his symptoms had me nervous it was his appendix.

We spent four hours in the ER before we saw a doctor who confirmed it was his appendix, another 45 minutes to FINALLY get pain meds and another hour and a half to get a CT scan. We then proceeded to wait until 5:00 PM yesterday afternoon until Shane went in to surgery. He was on antibiotics to slow his appendix from perforating but after almost 14 hours in the ER I was ready to scream. Oh how I could go on and on about the many flaws of our health care system.

Good news is that the surgery went well, the surgeon was able to easily removed the very infected appendix via labaroscopy which means smaller scars and hopefully a better recovery. Shane stayed overnight and was discharged this morning.

He is sore and on the coach right now, taking it easy and watching his ever favorite "West Wing" reruns. He is supposed to be off work for at least a week (the doctor said 2-3 but Shane and I both balked at the idea so hopefully his recovery will be much quicker) and he meets with the surgeon next Wednesday for post-op.

So on that exciting note, I will end this post. We are off to choose Jonah's eye glasses and by the way, most of you voted for blue frames!!!

Tuesday, February 3, 2009

Conversations with Jonah (too cute!)
video
Photos of Jonah in his wingbo. He half likes it but because it is such a work out he can get pretty frustrated. However, I've seen more extension and use of his trunk then with any other therapy tool we have tried for tummy time.


Thanks Grandma Hanna for the Valentine's care package! Here are photos of the boys enjoying their gifts.



Sunday, February 1, 2009

Below is a photo of a child in the Wingbo that we are starting to use for Jonah. It was specially designed for special needs children over in Europe to help with tummy time. We will let you know how Jonah takes to it!
Just a quick update. I have to get to bed so I don't feel like a zombie tomorrow. We have a big day ahead of us. First thing, we have Jonah's therapy appointment at 8:00. Then it is home to get our new insurance in place and start calling doctor's offices. We have to get in to Dr. Ho first thing as the boys have dozens of referrals that need to be put in the system, including their therapy with Terrio. Thank goodness we have Kern Regional to reimburse us because we are having to pay out of pocket for their therapy visits until the Blue Cross referral is in place (that is $50 a half hour!)

I did want to share our wonderful visit with Christi on Saturday. She spent two hours with us and both Shane and I left feeling like we were given the best information that we have yet received regarding Cortical Visual Impairment, Jonah's condition and things we can do right now at home to help him. She lent us the resonance board, Little Room and a positioning swing called the "Wingbo" which helps especially with head control. She also gave us several toys, including a bunch of Mylar toys, pom poms and other worksheets that give ideas on toys to create for Jonah.

She assessed Jonah per the therapy model she uses (which is downstairs on our fridge but I have forgotten off the top of my head which model it is). She marked where he currently is in way of ability so we can do things in that category to push him forward. She said it is still really important that we be using one color toys with a black blanket and black tri-fold to completely enclose Jonah so he is able to totally focus on one thing at a time. She mentioned the best colors to use now are red, silver and the white/black contrast toys. She talked a lot about Mylar paper, pom poms and even taking something as simple as a chip bag and turning it inside out to put over Jonah's right hand to encourage him to grab at it with his left hand which he usually neglects.

We are slowly helping Jonah adjust to these toys. The resonance board he is doing fairly well with (she suggested we first start a few minutes a day with this before trying the Little Room) as well as the Wingbo. He is not as much a fan of the Wingbo as he really has to work when he is harnessed in but with time this will strengthen his upper trunk so we are going to stick with it. If we like the Wingbo we have it on loan until March (she asked for it back when we next travel down to Fresno because she only has two on hand).

She talked to us about the brain's function in CVI, what exactly was happening with Jonah's condition and what good, consistent therapy meant in helping him achieve goals, etc.

She also talked to me about my concerns regarding starting the boys in Nursery with our church come April (post RSV season). She suggested that I video tape the Nursery so that Noah can see the children and hear the voices as well as Jonah. This would be more specifically for Jonah as change and new environments are very, very difficult for Jonah. He has not been around a lot of other children and struggles with even Noah invading his space unexpectedly. It was a great suggestion that I plan to bring up with the Nursery leader here the first of March. That way every Sunday at the time that Nursery would start I will have my father play the video so the boys can see (Noah) and hear the children's voices as well as the teacher so hopefully it will not be such a transition once they actually attend. All in all, I am sure the process will take several weeks of us going with the boys until they are comfortable in the new environment with new children. I have a lot cut out for me, making sure that everyone understands the boys' special needs...especially Jonah. Too much is just too overwhelming for him and it is important I help others understand that.

All in all our day with Christi was a very, very productive day.

After we had to find a tire shop as, with our luck, one of our tires was dangerously close to flat (a concerned driver signaled us from the highway and our tire pressure signal was on so we knew that this was the problem). While waiting we had a yummy lunch at Marie Calendars and then packed up to head home.

On the ear infection front, I am still not convinced these poor babies are over their ear infections! Noah is still pulling at his ears and Jonah's congestion has still not gone away which has resulted in some nasty throwing up. Of course Jonah is also bringing in two new teeth which can only be adding to the issue.

Tomorrow starts a new day and I hope we will enjoy our new pediatrician. I have heard a LOT of good things about him including from the nurse who assessed our boys on Friday (she was with the school district).

Oh! That reminds me that Friday the school district met with us and the boys. Our KRC case manager was also there. She was really happy to see Noah and his pulling to stand on everything. We talked in depth about both boys and my expectations about a home teacher from the district. We will be starting a program where a teacher will come in once a week for an hour and work with both boys to augment their ongoing goals with PT/OT, feeding, etc. I really enjoyed the two reps from the school district. One, a gentleman by the name of Jim who has over 30 years of experience in education (special ed to be exact), was just wonderful with the boys. He had Jonah giggling at him and smiling like you would not believe. He did comment that Jonah has wonderful social skills when someone actually takes the time to one on one interact with him.

So that is our latest....we'll keep you posted as to ongoing events.