Sunday, January 31, 2010

It has been a bit since my last update so I wanted to let everyone know what has been happening in the Hanna house.

Jonah continues to wear his heart monitor. There have been no episodes (of course, somehow I knew this would be the case). Both boys are finally over another round of colds but are doing much better. Jonah's eating is still up and down. We had several awful days last week but he turned around toward the end of the week. I do think the Periactin is helping some. Shane helps in the morning getting the boys fed, etc. while I am in the shower and he forgot a couple of days to give Jonah his Periactin. He ate just terrible the days that he did not get the Periactin so I do think the medication is helping.

Noah's allergies are bothering him and consequently his eating has also been awful. I am at my ropes' end with all that has been going on with his up and down eating woes. I so worry that he is 27 months and only 23 pounds. He has a lot of catching up to do. So, after much thinking Shane and I agreed to meet with another surgeon in Madera regarding the pyloroplasty. This procedure has been suggested by the GI Clinic for some time now but when we met with Dr.Tamura regarding Jonah's fundoplication, he said he is not an advocate of the procedure so that stopped us from pursuing the surgery with Noah. But since that time they repeated Noah's gastric emptying delay study and it was even worse then it was several months ago, which means that even with him being mobile and able to get around he is NOT doing better with getting food moved through his system. I plan to really ask a lot of good questions Tuesday, including what the likelihood of seeing better eating habits/appetite out of Noah will be if we do go through with the surgery. I hate to put Noah through surgery, he has not seen anything in way of surgeries since the NICU (believe it or not) and only been hospitalized twice since coming home two years ago (which is amazing for a micro preemie). So we will really have to pray about this procedure but I am looking forward to the appointment and getting more information from this surgeon.

We also have other possibilities that we are pursuing right now as a family. I really wish I could elaborate but everything is so preliminary right now that all I can say is keep us in your prayers and that the Lord will guide us in making decisions in the next couple of weeks.

Shane and I stay busy (of course). I am still working with the 14/15 year olds in our young womens group at church. I love every minute of it. They are such sweet, righteous young women who try very hard to make good choices every day. It is a tough world to be in and they happen to be in an area where they are very much a religious minority so they have a lot of people questioning their beliefs but they are strong in their convictions and an example to me. I have learned a lot from them. Plus, what a fun age to teach! They are so full of energy and all the wonderful possibilities that are yet to is such an exciting time in their lives. Shane is still working as the director of activities although he has been told they plan to release him (it is a big calling with a lot of stress attached to it). Jonah and Noah seem to be doing well in nursery. Noah is struggling with sitting through the first hour of church and we are working on what it means to be "reverent" instead of throwing tantrums the entire hour we are in our Sacrament meeting. *Sigh* Let's say it is an ongoing process.

We miss Grandpa and Grandma Langston and Hanna too. We were lucky to have both sets of grandparents down for the holidays and January. It was so much fun having them here and enjoying their company. It seems a bit more quiet with everyone gone now.

I can hardly believe tomorrow is February. Before we know it, Valentine's Day will be here!

Thank you everyone for continuing to follow our boys. Keep an extra prayer in your heart for us this week. We have a lot of things happening this week and decision to make so having the knowledge that we have others thinking and praying for us will really help.

Stay tuned. Hugs for now.

Wednesday, January 20, 2010

Thank you, Brooke and Holly, for sharing this very special article with me. It comes on the heels of a very emotional week with our Jonah and so the message was much needed and well received. I love seeing someone put to words and music all the emotions a parent raising a special needs child may feel and how God feels in watching us through our journey.

I know you will enjoy this link. I can't wait to buy the album and enjoy the music.

Janice Kapp Perry, Far Different Places

Tuesday, January 19, 2010

Well, today's visit did not provide much "new" information. We first met with the neurologist, a very kind, young specialist. After describing our past couple of episodes his first comment was, "well these are not typical seizures." We talked more about Jonah's history and he did agree that we could not rule out the possibility of seizures. Jonah's latest EEG was considered abnormal. The neurosurgeon said that even with Jonah's grade IV bleed at birth his brain should have shown more development and activity at this time than the EEG showed. He did say it was a tough call as this was his first EEG (so he did not know if this would be Jonah's baseline) but this did raise questions regarding possible seizures and their affect on Jonah's neurological situation. I guess this is not too surprising as Jonah did suffer the most severe brain bleed at birth, his brain activity will always be abnormal. However, for the specialist to even think that Jonah's EEG was on the abnormal side as the brain can rewire itself (called neuroplasticity) confirms worries I have been suffering from recently. Is Jonah making progress? Why so slow? It is heart wrenching to see the small progress that he makes and how much he struggles. Why are some other kiddos with grade 4 bleeds advancing quicker? Why does Jonah struggle so much? Maybe there is more to the picture then we understand. As follow up, the neurologist wanted us to first follow up with cardiology and after the 30-day monitor, if nothing was recorded of significance then we would schedule a 24-hour EEG with sleep time at the hospital. He did say that although abnormal the recent EEG did not show activity in the area of the brain that would cause epileptic episodes but that a better picture could be obtained by monitoring the brain for a 24-hour period that included sleep time as during sleep the brain is more likely to show epileptic activity if the individual is at risk for or will develop seizures.

After neurology, we met with cardiology. The wait was just awful (an hour) and Jonah had absolutely no patience. He had an early morning and was not able to sleep and is generally somewhat uncomfortable and impatient when in an environment that is not familiar to him. Unfortunately right now, this brings with it some awkward behaviors. Jonah's biggest issues right now when it comes to impatience, anger, or boredom are banging of the head or hitting himself with his right fist. *Sigh* It makes for quite a show, I am sure. I do try and stop this when possible but as with everything that has come before it takes time for him to grow out of it. I pray this happens and quickly. Anyways, finally we were able to get in and Jonah's King of Hearts was set up. He will wear two patches on his chest and be attached to a small box which records 30-second intervals of his heart rate (records and then replaces with a new recording). If Jonah goes in to an episode we press a button that records 60-second intervals and we can do this up to 3 times. Once completed, we have to get to a land line and call an 800 number to transfer the information to a data bank where they track the information to be given to the doctor at the end of the 30-day period.

After, Grandpa took us to Claim Jumpers. Yummy food! It was a nice break as Fresno has a Claim Jumpers and Bakersfield does not. Next, Grandpa drove home through the awful rain and we finally made it back to Bakersfield after 2:00 p.m. It was a long day but at least we accomplished a few things.

So this is our latest. We are all still trying to overcome colds. Noah ate awful today (his usual when he gets sick) but was still full of energy and running everywhere. Jonah has an awful, runny nose and lots of congestion. I am suffering from the same, plus coughing and a nasty sounding voice. Hopefully the worst is over! Too bad we are sending Grandpa and Grandma off with a round of illness here at the house. I hope they go home healthy (so far, so good).

Thanks everyone for your sweet comments and concerns. Keep praying for our babies, that is all we ask and is the most important thing that can be done.

Monday, January 18, 2010


Sorry it has been so long since our last posting! It has been just hectic here and I've only found time to update Face Book lately. I have definitely neglected my blog!

I can't believe it has only been a month. A lot has happened this month.

First, Jonah had another potential seizure episode about two weeks ago. It came on the heels of his being very sick (I am not sure yet but this may be a trigger for his episodes as the past two seem to happen right after an illness). This was an awful episode of tachycardia. We had a church ward friend that is a GP (general practitioner) check Jonah for symptoms of pneumonia or anything serious enough to warrant getting to an ER immediately. After checking him out and finding that his lungs were clear, ears fine and throat fine he told us to do what we were comfortable with but to get him to a hospital because of his high heart rate (thank goodness we have a pulsox in our home). So we took Jonah, with equipment, down as quickly as we could to the childrens hospital in Madera. His elevated heart rate lasted all in all for four hours. Yup, four hours ranging between 180-190. Finally, right upon our arrival, his heart rate lowered and he passed out from exhaustion. Shane used a simple, to the point analogy. Imagine running a marathon beyond your ability without stopping for four hours....that is pure exhaustion. Frustrating for us because we checked in to the ER with Jonah sleeping but stable. All they had was our description (once again) of the event. Jonah was in the ER back in November for a similar episode but by the time the ER doc saw him he was stable so the doctor said could be a seizure and sent us home to call his neurosurgeon. Same thing this time, although because of the length of time with the tachycardia I insisted that a cardiologist be contacted. At least we went home with a referral for a 30-day monitoring device and a referral to Neurology to get a work up on Jonah and discuss "other" testing for seizures. Both specialists that the ER doc spoke with agreed that all the symptoms together (rapid eye movement, claminess, tachycardia, jitteriness, in and out coherence of surroundings) pointed to a seizure. Great, tell me something I don't know! In the mean time they won't treat anything until they have something on paper (test result, etc.) showing Jonah really does suffer from seizures. So how long will it take before we are lucky enough to be testing Jonah and actually capture one of his unpredictable episodes?? My worry is that his little heart won't take several more of these tachycardias and I do not live in an area where there is competent pediatric care. Tough position to be in, living two hours away from the nearest children's facility that is capable of handling my child. *Sigh*

Tomorrow we meet with the neurologist for the first time. We will see what they recommend for testing. The ER doc did talk about repeating Jonah's EEG (which really I feel is not that helpful unless you happen to be in an episode or they are able to induce an episode during testing). I am hoping that tomorrow the neurologist will be more aggressive and perhaps order testing that extends beyond a couple of hours, maybe a 24 hour test or one that he can wear and it record information over a month or so (like the heart equipment he is receiving tomorrow). He picks up cardiology equipment after neurology. The test is referred to as the King of hearts Monitor. Jonah will wear it for 30 days and should he experience another tachycardia it will record everything for evaluation.

Needless to say, we have been somewhat preoccupied at this house! On top of this event, the boys were both sick as can be with bacterial infections and once again this past week they started to get sick again. Noah seems to be somewhat recovering but Jonah and I are very ill. We went to the pediatrician this morning and he did not want to give antibiotics yet but gave us lab slips should things not clear up in a day or two. I even had him look me over as my doctor was not in today. I am completely miserable, thank goodness Grandma and Grandpa Langston are here and have been helping with everything. I have been able to rest and hopefully in the next day or two I will feel better. I hope. I was actually hoping for some antibiotics today, I hate being miserable and it makes taking care of the boys so much more challenging.

Today the boys did not have school and I canceled therapy as they are ill and just need to be home recovering. The weather was just awful, awful. We woke up to an awful wind storm that bent and eventually broke our patio umbrella. Aargh! This is not very cheap to replace but I guess we have a few months until spring and it is just a "thing" and life will go on. Still, it made for a frustrating morning.

Grandma and Grandpa Langston return home Friday. We will miss them. They are such a huge help and thank goodness they were here during Jonah's last episode as we left Noah at home and Shane and I rushed Jonah to the ER. It would make life so much more simple having close family that we could count on but for now, God has other plans so we will be grateful instead for their frequent visits. Both sets of grandparents go above and beyond in their help.

I will update the post later and give information about Jonah's appointments tomorrow. Noah continues to do well. We actually got a bit of bad news last week. Blue Cross decided to change it's HMO plans and now charges a $20 co-pay for every therapy session whereas last year they did not charge any co-pay. That is a hefty bill to pay when you have 8 visits a week and definitely affects the budget. Eventually Medical will reimburse for Jonah (but that takes months), so because of all of this we dropped Noah's occupational therapy. He tested for his actual age with his last assessment (not even adjusted) so I did not feel as badly dropping the OT. He just goes for PT now, which puts us down to 7 visits instead of 8. Shane is due for a cost of living increase and is trying to negotiate the cost of the extra visits but his boss has been MIA about his Christmas bonus (although when he inquired he was told that he was to get a bonus but that his boss, after leaving for vacation, had remembered he'd forgotten to take care of the management bonuses.....we are yet to see the bonus). So we are frustrated to say the least. Pray that things will go through and that somehow we can make this new co-pay expense work out. It is tough not being able to work, especially in situations like this. I keep thinking how much easier it would be if I could work. I know it is not the right choice for us now but it is moments like this that really frustrate me.

Thanks everyone for your prayers and support. We love you all.

Monday, January 4, 2010

Disneyland New Year's 2010! The boys thoroughly enjoyed themselves and were given the royal treatment as this was their "first visit." They were even given first visit buttons.