Friday, October 31, 2008
What a fun night! The boys behaved themselves quite well too. We took lots of fun pictures of Allie in her pretty lady bug costume and the boys in their frog costumes.
Monday, October 27, 2008
Friday, October 24, 2008
We have an answer for Noah. We went to Madera today for a study that looked at Noah's GI system and how efficiently it is digesting food. The technician confirmed that Noah suffers from gastrointestinal delayed emptying. She said that over 1.5 hours they consider normal digestion of food to be around 65%....Noah only digested 25% of the three ounces he ate.
Unbelievable. I wish they would have taken his reflux more seriously sooner and ordered this exam back in August when I was complaining about his constant issues with solids and vomiting but finally we have an answer.
I am supposed to wait and hear from the clinic this next Tuesday. Options are either medication or worst case scenario surgery but I assume that they will be conservative and try medication first. At least that is our prayer.
Jonah had us scared he was coming down with something Thursday. I had to cancel their flue shots for the third time. He had two nasty diapers in the morning and was coughing up a lot of flem. The rest of his day was fairly stable and he ran no fever so I think he might have a slight cold plus a lot of yucky teething (his top two teeth are getting ready to come in).
That is the latest in the Hanna house.
Thursday, October 23, 2008
Monday, October 20, 2008
I wanted to include this information on CVI (Cortical Visual Impairment) as it is important for our family and friends to understand what this diagnosis means for Jonah:
CORTICAL VISUAL IMPAIRMENT
Cortical Visual Impairment (CVI) is a temporary or permanent visual impairment caused by the disturbance of the posterior visual pathways and/or the occipital lobes of the brain. The degree of vision impairment can range from mild to severe visual impairment. The degree of neurological damage and visual impairment depends upon the time of onset, as well as the location and intensity of the insult. It is a condition that indicates that the visual systems of the brain do not consistently understand or interpret what the eyes see. The presence of CVI is not an indicator of the child's cognitive ability. The terms Cortical Visual Impairment, Neurological Visual Impairment, and Cerebral Visual Impairment, are sometimes used interchangeably.
The major causes of CVI are asphyxia, perinatal hypoxia ischemia ("hypoxia": a lack of sufficient oxygen in the body cells of blood; "ischemia": not enough blood supply to the brain), developmental brain defects, head injury, hydrocephalus, and infections of the central nervous system, such as meningitis and encephalitis.
Initially, children with CVI appear blind. However, vision tends to improve. Therefore, Cortical Visual Impairment is a more appropriate term than Cortical Blindness. Most children show some recovery after being diagnosed with CVI but very few recover completely. Usually the most dramatic improvement happens in the first two years after the diagnosis. Improvement is related to children’s brain plasticity, development and degree of neurological damage. A great number of neurological disorders can cause CVI, and CVI often coexists with ocular visual loss so the child should be seen by both a pediatric neurologist and a pediatric
ophthalmologist. The diagnosis of Cortical Visual Impairment is a difficult diagnosis to make. It is diagnosed when a child has poor or no visual response and yet has normal pupillary reactions and a normal eye examination. The child's eye movements are usually normal, however nystagmus can be present in some children. The visual functioning will be variable. The result of an MRI (Magnetic Resonance Imaging) in combination with an evaluation of how the child is functioning visually, provide the basis for diagnosis.
Friday, October 17, 2008
Thursday, October 16, 2008
Wednesday, October 15, 2008
Our day started at 5:30 AM and ended at 6:00 PM. We were on the road all day and visited four clinics at the children's hospital in Madera.
First, we saw Jonah's eye specialist and after a discussion about our LA visit and my constant prodding for answers the specialist finally said it really comes down to this, Jonah does have vision his eyes are anatomically fine but he suffers from what is referred to as Cortical Visual Impairment, or visual impairment due to brain related disorders (in this case Jonah's severe bleed at birth). Finally, it was good to hear a specialist talk about something specific that I can research and better understand. Also, it helps me as I requested a new vision specialist for Jonah as after a few months of trial I finally reported to our local early intervention case worker that the gal working with Jonah was just not doing enough. I called the Junior League of the Blind this morning and spoke directly with the foundation director, told her of the specific diagnosis (CVT) and also my expectations in a therapist. She said this was extremely helpful as now she could communicate with the new therapist and they could focus on specific exercises to address Jonah's CVT. Hopefully this new therapist will come better prepared to talk to me about goals, progress, ideas, etc.
We then went to Noah's pulmonologist who stressed to stay away from the public this winter. If Noah gets RSV we can look forward to an unpleasant hospital stay because of his delicate respiratory sitaution. We talked about Noah's slow weight gain (he is still just 16 pounds) and his recent increase in vomiting, a major concern of ours especially over the past few days. Noah is cutting his fifth tooth and has had several more bouts with vomiting as well as a low grade fever over the past few days. I called the GI Clinic this morning begging to be seen because I am so worried over the increase in vomiting since we started solids with Noah and the increase in the past several days...of course I was told it wouldn't be possible. Here is the secret: get a doctor from another clinic to personally call and things happen! So our pulmonologist called up to the GI Clinic and asked them to squeeze us in which they did. The doctor that saw us agreed to start with two tests: swallow study as well as a "Nuclear" study to see if Noah is having any GI digestion issues (delayed digestion, etc.) which could contribute to an increase in reflux, eating, etc. After these tests a food allergy tests is likely. Oh joy. He also gave us two cans of hypoallergenic formula to try over the next week to see if there is improvement. Personally, I hope this is NOT the case as the cans cost anywhere from $40-50 a can!! So mom is secretly hoping this is NOT the answer.
I hope to get the tests scheduled for Friday as my Dad will still be here and it will be so much easier to accomplish. I plan to call and pester radiology tomorrow!!
We also saw the feeding clinic today and I got some new tips on how to use the NUK brush with Jonah as well as some positioning techniques to help him learn how to stop tongue thrusting so much. We didn't do much with Noah as he pretty much looks at food right now and throws up although we did talk about different NUK techniques that I could try to help with his gag reflexes.
All in all, a very, very busy day. I am exhausted and glad to be home. Noah is squeeling and bouncing around in his exersaucer (where does he find the energy?) and Jonah is chewing on his fingers hanging out in the swing.
So that is our day and early night. We hope all is well with each of you and we'll keep you posted as to upcoming tests, etc.
We also got a hand splint for Jonah (referred to as the Mckie splint). It is designed to extend his thumb for 8 hours a day and encourage him to flex his hand and use his fingers more freely without clenching his fist so much. The size we purchased was a bit big so I had to reorder the next size down Monday. Hopefully it will be here tomorrow, I will take photos and upload them plus the Web site where you can order similar splints for those interested who have children with early signs of Hemiplagia or tightening of a hand due to CP, etc. Again, Jonah has no CP diagnosis but does show signs of potential problems with his left hand specifically so we are hoping this splint will break some of these patterns.
As usual, never a dull moment in the Hanna home!! Hopefully tonight will be puke free!
Friday, October 10, 2008
Tuesday, October 7, 2008
Another wonderful surprise, Grandma Hanna came down to join us! We were lucky to find a last minute flight from Portland to LAX. We are so blessed to have her with us!
I am on the way to pick up the boys' birthday cakes.
More photos to come!