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...

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!!!

Conversations with Jonah (too cute!)

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.

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.

The above frames are what we chose for Jonah (vote above on what color we should choose!) through the Disney line. My goodness, frames and lenses are expensive...even for babies. Next time I think we'll buy his frames online. It is a good thing that Kern Regional offered to reimburse us this time as our insurance won't pay for the glasses.

Also, good news. The director of Blind Babies Foundation agreed to meet with Shane, I and Jonah on Saturday morning. We are taking the long drive down to Visalia to get a sturdy Little Room and Resonance Board. She was so kind, she isn't charging us for the materials but asked that we return them after Jonah grows out of them. I was so excited! She suggested we use the Little Room built out of sturdy wood as it will coordinate better with the Resonance Board (Shane and I were going to put one together out of a cardboard box). She also is going to spend time with Jonah, assess him and give us good ideas of what we can do at home to work with him.

In other good news, I heard from our case manager today and she was able to speak with the Visual Impairment specialist of the school district. He has decades of experience and also has a blind daughter. He is taking on Jonah's case and is going to see if we can't get him some in home services that would work.

So it seems that the squeaky wheel has indeed got the grease this go around. Hard work has paid off!!!

Well, it certainly has been one of those days.

After all this fuss about getting a new vision therapy program for Jonah we are running in to huge problems with this new doctor before we have even begun anything!

Apparently they are trying to get us to agree to a bunch of expensive testing, half of which does NOT need to be done because Dr. Kelly (Jonah's specialist in Fresno) is overseeing the medical side of Jonah's needs, which was stated several times to Dr. Sutter's office. They are still asking for testing, including a Visual Evoked Potential test. Now I have heard from several sources, including a trusted therapist at Blind Babies Foundation in Fresno as well as Dr. Kelly that this test is not an accurate measurement of vision for children as young as Jonah. To top things off, the testing is NOT covered by Kern Regional Center so now Dr. Sutter's office is asking if our insurance will pay for it (of course not).

After several phone calls yesterday and today I finally spoke with our KRC case manager and she was very discouraged by the confusion that Dr. Sutter's office has created. The regional center is having to review their contract and their quality assurance team is looking at maybe even breaking contract because Dr. Sutter has made so many demands that fall outside of their agreement. To make matters worse this assistant is telling our case manager that they won't offer therapy services to a child as young as Jonah. Again, what is going on? Our case manager told me today she read, verbatim, their contract with this office staff member stating that services from the ages of 0-14 would be provided by their office for children with vision related issues. She said she left the woman speechless and unable to answer why she was telling her that therapy could not be offered for Jonah.

I think I have it figured out. From the first phone call when they started saying that Jonah would require a medical review by Dr. Sutter, an eye dilation study, etc.,etc. I said NO. We are not coming to you for medical review and or help. Dr. Kelly will be overseeing anything related to Jonah's medical needs. We are coming to you for THERAPY and therapy ONLY. An hour later I got a call back stating the doctor wanted the tests done to which I said, "That is fine but I am the parent and I have the right to refuse. My son does not need his eyes dilated nor does he need to have an eye exam. We already have a prescription for eye glasses and he does not need this done."

I think it comes down to the fact that between me saying no and our early intervention case manager saying no they are clearly upset. I have been told by several professional sources that Dr. Sutter is really money driven and very excessive.

But what are our options?

This brings me to the next problem. If Dr. Sutter's office refuses to provide Jonah services there is nothing KRS can do. We can't do anything either. If that is the case and we have turned away Junior League of the Blind we are left with nothing.

I was so upset today. I am tired of living in an area that is two hours outside of Los Angeles and Fresno as both areas are rich in pediatric services. Yes, our regional center is one of the best in the state for services but that is because we are lacking in so much!!

I took it upon myself today to call the Blind Babies Foundation which has been a referral by Dr. Kelly as well as a good friend back east (hello Amanda!) whose vision therapist is phenomenal. I have been complaining to Dr. Kelly so she said she would contact the foundation but today I had just had it.

So I contacted the director and she and I spoke for 45 minutes. I told her everything from start to finish. She said she has been following things with the Junior League for two years and it seems in the past few months things have just exploded in way of issues/problems. I told her we have no resources here outside of Dr. Sutter, to which she added that her type of therapy was more medically based and not as affective. She gave me suggestions of things to try immediately with Jonah and we talked in length about what she calls the "Little Room" and a "resonance board" which can be placed underneath so each time Jonah moves his body the board resonates and hopefully encourages Jonah to move more. She brought this up when I told her that Jonah was struggling still with rolling. She said that because babies with CVI have no visual cues they are not motivated to explore and seek after things in their environment so we have to figure out what can encourage them. We have known this for some time and even I have heard before about the Little Room from Amanda as she copies many of her therapy notes and sends them to me (a true friend!) The Little Room is also used to stimulate babies with CVI as it is an enclosed box with different textures, mirrors, auditory toys, etc. Of course to buy it online it costs a mere $1,100. No problem right! HA! Thank goodness I was able to dig through my notes sent to me by Amanda and find the one with suggestions on how to economically afford putting together a Little Room. Shane plans to put it together this weekend and we plan to buy $5 plans for the resonance board as it really is a thin piece of plywood and nothing more. I bought a black tri-fold today from Office Depot to replace the felt black board that Junior League gave us to enclose Jonah when on tummy time so he can better focus on his toys. I also found a cheap black twin comforter that we can use to spread out underneath him so he can concentrate on his toys with as little distraction.

In 45 minutes I had more suggestions and direction from this foundation's director then I did in 9 months with Junior League of the Blind. Shane and I have discussed and we feel it is important enough that if it is necessary we go to Fresno twice a month to meet with this therapist and pay out of pocket so that we can learn and Jonah can learn how to better develop his vision. She was an angel on the phone today to spend so much time with me and was truly concerned. She was going to call the regional center and talk to my case manager as well as talk about another therapy option for KRC. Apparently she has a former coworker who went back to school for additional vision certifications who has opened her own clinic about an hour from here and she thought she might be a closer and good fit for Kern County.

If nothing else, I hope I got the ball rolling because the children in this area who suffer from visual impairments need the same kind of top services offered in Los Angeles. Vision affects everything, it is too important to waste any more of Jonah's time on trivial therapy that is just not effective.

We are still waiting to see if the situation works out with Dr. Sutter but it really is sounding unlikely and frankly after the hassle of the past few days I'm starting to feel very uneasy about following through with them.

I planned to have Jonah's frames and prescription filled by their office but that is my next job to find another optometrist where we can go to get Jonah's glasses.

In other news (yes, there is more!) yesterday at Jonah's OT appointment I ran in to a mom whose 15 month old daughter was in a helmet. We got to talking and I told her of our experience and she said she had been going to an orthotist in Torrance and they were referred there by the Plastic Surgery department of Childrens LA. She seemed a bit shocked that the local orthotist had given up as she said her daughter will be in her helmet until 3. Now, her child does not have hydrocephalus nor a shunt so she did admit she did not know much about our situation but she said her daughter had birth complications and suffered a stroke in a recent surgery so her brain was growing very slowly (same as Jonah, the reason we were told his little change was the reason another helmet would not be helpful). So I decided we are getting a second opinion. I am getting the records from the local orthotist faxed over to Childrens LA and as soon as we get in to our new pediatrican (Dr. Ho) with Blue Cross in the next couple of weeks I am asking for a referral. I hope our insurance will cover it. It would at least put my mind at ease if they told us we have done everything we can, otherwise I know it will eat at me not to know.

Noah's vomiting continues (fun, fun!). I am at my rope's end so I contacted his nutritionist yesterday at the GI Clinic about maybe switching his calorie supplement as it had been mentioned in our last appointment there was one that might be easier to digest. After two phone calls and reviewing their growth charts (to which she was encouraging and said that really both boys were doing well) we decided to start the Arithromycin. In fact, after Noah's two throw ups in the car this afternoon (we were trying to run some errands and take a quick walk at the mostly empty park) because he hates his car seat, I went straight to the pharmacy and filled that prescription. He took the first dose tonight. I am praying and praying we will see an improvement and that every single feeding time will not continue to be such a nightmare of a battle. I know it can't be fun for Noah too to be forced upon to try and eat. Yes, I have resorted to forcing the first bite of food to get him started which at least gets him going lately for a few more bites. I know everyone tells me not to force anything but if your child is not eating anything, well sometimes you compromise! A big part of this battle has been his sickness, after a full month of the boys being sick with ear infections and viral symptoms I think Noah is finally getting better (Jonah still has some residual nasal drainage but I think he is turning the corner). So tonight, say a prayer or two for Noah. Let's hope this medication helps! I really had a hard time deciding to try it as I don't want to deal with resistance to an antibiotic and I don't like having him on it long term but honestly, we are out of options.

Sometimes I have a hard time believing that it is only Tuesday. Didn't just ten years pass by in the past two days? Goodness, sometimes I feel like I am 110 years old. I look around at the other moms my age and I don't even feel like I relate. It can be a lonely feeling but I have always loved my friends and the importance of friendship so I have found how to compromise. I don't think I could live without friends and I am learning the true importance of really listening and being there for other people, after all being a friend is really giving of yourself. Maybe that is a lesson that God is wanting me to learn, the value of genuinely listening and supporting others.

Well, that is the latest and greatest at the Hanna home.

Until next time.....

A cute photo of Daddy playing with Jonah at bed time. Here is the famous photo of the day Noah took his first steps with his walking toy!