All dressed up for their first day back to school! The boys both enjoyed their first day back to the Richardson Center today. GI Clinic went well on Tuesday. Jonah weighed in at 27 pounds, Noah 24 pounds. Hurrah for Jonah! We have worked very, very hard to make sure he would gain weight. Thank you everyone who fasted and prayed for Jonah the past couple of months. Your faith has blessed our family once again. Jonah is out of the clear with his weight issues for now. We get to return back to working on textured food with Jonah and hopefully will make progress with the foods that he tolerates. This is just a snippet of what has been going on, more later!

Friends and family,

Many of you know our story with prematurity and the ongoing challenges that Noah and Jonah face as a result of being born at 24 weeks.

That is why I have joined the March for Babies walk which benefits the March of Dimes. Our team has joined thousands of compassionate teams across the country that support March for Babies. Won′t you please help us in this worthy cause?

Join us in the walk that helps all moms and babies.

The money we raise for March for Babies will help:

...support all-important research offering preventions and solutions for babies born too soon or with birth defects

...educate women on things they can do to increase their chances of having a healthy baby

...provide comfort and information to families with a newborn in intensive care

...push for newborn screening and health insurance for all pregnant women and children.

Please help our team help babies. We invite you to sign up and join our team on the day of the walk or if able, offer a donation online (every penny counts!).

Click on the following link if you wish to donate and support us:

Team Noah and Jonah

Thank you, everyone, for all your support! We love and appreciate you!

Friends and family,

My sister, Valerie, is in her grad program at George Washington University and is doing a blog and discussion group for mothers with children with special needs. She needs your help! Please go to www.mothersofmiracles.org and click on discussion board (on the right) and join her discussion group. The more people that come and comment on her website, the better grade she gets. This is a quick and easy service project and would help my sister out A LOT!

Well, I am not even sure how to some up the last two weeks. It has been one bumpy ride. Over a week ago things started off in the normal fashion on Monday the 1st of February. Noah had started with a runny nose over the weekend but nothing that did not appear to just be allergies. However, Monday night brought little sleep and a lot of throwing up of mucus as well as a very flushed and feverish Noah. By morning, we knew something was not right. We had a scheduled appointment with a surgeon to talk about the pyloroplasty for Noah and we decided to go through with the appointment as meeting with Dr. Hodge takes weeks. We did meet with Dr. Hodge but by the end of the meeting we knew we were going straight to the ER to have Noah looked at. We had thought of returning to Bakersfield and checking in to see Dr. Ho but I felt strongly that should Dr. Ho think that Noah need to be admitted to a hospital we would be looking at a return trip to Madera. So instead, I headed straight to the ER. It was absolutely crazy busy. We waited hours to finally meet with the ER doctor. They took Noah back and immediately started breathing treatments but the nurses and RT thought that Noah sounded mostly clear and that he possibly had a cold. The ER doctor (thank goodness) felt prompted to keep Noah overnight because of his pulmonary history and by morning Noah had worsened, even with the continuous treatments. The next day, the pediatric doctor decided to run the RSV test on Noah. At this time (Wednesday), I knew that Noah had RSV. It must have been that motherly instinct, I'm not sure, but something told me this was the problem. To worsen my hysteria, Noah passed two large, bloody stools. We immediately started a probiotic as the doctors/nurses suspected C-dif, which is a condition that can develop as a result of high antibiotic use (basically the good bacteria is lost and replaced with bad bacteria in the intestinal tract). The next day Noah was started on the Flagyl antibiotic to battle the C-dif. The RSV swab returned positive and Noah was put in to isolation. By Thursday morning, Noah's conditioned had worsened and after a chest x-ray and blood work pneumonia was confirmed so a second antibiotic was started to battle the pneumonia. Poor baby. I truly was beside myself. I could not believe that poor Noah was battling three issues at once! However, RSV does and can often cause pneumonia, especially in those patients with a weaker pulmonary situation. Friday night was very scary as Noah's oxygen saturation was not doing well and we had increased Noah to 3 liters of oxygen. The RT's/nurses were talking about a high flow oxygen system and starting Noah on 7 liters. I started to panic thinking of the possibility of failing on this system which would ultimately mean another ventilator situation. Thank goodness the good Lord heard our urgent prayers and Noah stabilized overnight.

In the middle of this, Jonah started having similar symptoms Friday morning. We had flown Grandpa Langston in the Wednesday before due to my suspicion that Noah had RSV. Grandpa was flown in that night and was at home taking care of Jonah. Grandpa ran Jonah to the pediatrician and an office swab tested positive for RSV. So Grandpa ran Jonah down to the Madera ER with the positive results and by Friday night Jonah had joined Noah. Oh my goodness, at this point we were not sure what else could possibly happen. I was grateful to have Grandpa, although it meant bringing Jonah with him. Shane also joined us and relieved Grandpa and I Friday night so we could rest at a local hotel. I was truly exhausted as I was suffering from little sleep and being closed up in Noah's room without much of a chance to leave. Noah has a severe anxiety of hospitals and will cling to you 24 hours a day during his stay, even putting him down to use the restroom would include a screaming fit until you were able to pick him back up. I was so exhausted from sleeping on the hard hospital bed that Friday night I was exhausted and thankful for a bed that was not hard to sleep on nor involved being woke every couple of hours or more often dependent upon Noah's various monitor/alarms.

Grandpa and I returned Saturday morning and gave Shane a break. He checked in to the Ronald McDonald house for Saturday night and relaxed for a couple of hours before returning. We managed the rest of the weekend in this fashion. To our surprise Sunday morning the doctor decided that Jonah was stable enough to be discharged and finish his recovery at home. Grandpa returned with Jonah and Shane left later that night in a rental car to return to Bakersfield.

Finally Tuesday, Noah started to wean down considerably on his oxygen. I prayed with a lot of fervor Tuesday night that we would be allowed to leave Wednesday for home. Tuesday night Noah took mostly care of the problem by removing his cannulas during a temper tantrum and doing well on room air. I woke up Wednesday with a good feeling we would be going home. We waited all morning for the doctor who strolled in around noon. To my frustration Noah had fallen asleep and when the RT returned to do a treatment he was satting around 88-90!! Of course, at this moment the doctor walked in. We sat and talked about what to do, I explained that when awake he was satting well and Noah woke up during this conversation and sure enough his sats were up in the mid 90's. The doctor insisted on discharging with oxygen, I explained we had everything at home and could handle this and even explained that I was to the point of going home no matter what (they wanted him completely off oxygen) because we had the full ability to manage his short term need for oxygen. The doctor finally agreed but said we would need the new oxygen order to be submitted to insurance, etc. and that may not be completed by the end of the day. I said not a problem, I could handle putting pressure on our insurance group to get it done. I truly don't think he believed me but it helps that I have a close relationship with one of the agents in the authorization department and she knows me by name. So after he left, trying to convince me we'd be at the hospital one more day, I immediately got on the phone and called Claudia. She gave me her fax # and told me to have the case manager get her the new order asap. Within 20 minutes the new order was through and they had called the local Apria group. Two hours later, we were still waiting and I decided to go pick up Noah's meds to return home. I called the Fresno Apria to find out where the delivery was and how long we would be waiting (I was a Mom on a mission at that point). They explained to me that they were not able to deliver the equipment until after 7:00 p.m. I said that was just not acceptable because I had a two hour drive home and why could I not pick up the equipment? Well, of course! They said. So I drove the 15 miles to pick up the equipment and within 45 minutes we were FINALLY out the door. That is one day that I was grateful for my tenacity and persistance. If I had sat around waiting, waiting we never would have got out of that hospital until very, very late. As it was we did not get home until 7:00 p.m. I was so worn out between dealing with Noah's situation to battling the doctor to get my son home (who was declared fine aside from his ongoing need for a low dose of oxygen which HELLO I think after over 18 months I can HANDLE a 1/4 - 1/2 liter of oxygen and nebulizer treatments) that I was more then thrilled about getting a shower and going to bed.

I have never appreciated my own bed as much as I did last night. I am so, so grateful to be home with my boys. Thank you to everyone for your prayers, text messages, emails and everything else (dinners, etc.). We have such a great network of family and friends. We could NOT do all of this without you!

With Grandpa in town and insisting that we take a break for Valentine's Day, Shane decided on a hotel near a beach in Los Angeles for the weekend. I am thrilled, I love the ocean, it is so peaceful and calming to me. We leave tomorrow night and I look forward to relaxing and enjoying some time with Shane.

Thank you again everyone. Keep praying for our boys. We hope this was the last time for a long time that we will see a hospital. Also, I neglected to mention that Jonah is recovering at home. He is still symptomatic with RSV but doing much better.

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 come...it 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.

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

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.

Friends,

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.

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.

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.

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!