Thursday, August 28, 2008

The poll results are in. It seems that the highest number of votes were for Jonah looking like Shane, then that both boys look like us and thirdly that Noah looks like Shane....ha ha ha! So there you go, it seems that everyone thinks the boys look like us or Shane.

Noah seems to really like squash. Yeah! He gobbled it up tonight which is great. He still managed to gag himself on his rattle and spit up a bit but that is not due to stomach discomfort.

We had another long day down in Fresno today. Aunt Valerie came with us to make the long, hot trip. Noah is starting another asthma treatment that we may eventually use to replace the Albuterol he is using. We also are trying to wean him off Lasix. It will be nice to have him off at least one diuretic.

The GI Clinic was pleased with the boys weight gain. Noah almost made their minimum goal for weight gain since his last visit so they decided it was close enough to pass for now. We are attempting to deal with his hate for the bottle right now by adding more Benecalorie and plugging along with the solids. He still hates his sippy cup but will drink just straight out of a cup without a nipple, etc. He is so silly! So we'll have to keep up with the sippy cup and see if we can't get him one he likes.

Jonah is starting solids too! The physician's assistant we met with today said we should go ahead and start him. He had his first bout with green beans tonight and did well. He still thrusts his tongue a lot but hopefully this will improve with more practice. We also put in for an occupational therapy evaluation so they can assess his tongue thrusting, ability to eat solids well, etc. I am sure they will want us to NUK brush him also for help.

So that is the latest on our little men. We hope everyone else is doing well.

Tuesday, August 26, 2008

Photos of the blessing from Sunday. It was tough getting good photos as both boys had minds of their own and Jonah wasn't happy about being in his outfit for long. The bottom photo is of my entire family including my sister from Washington, D.C. The top photo includes all the brethren who participated in the blessing, including a good former roommate's husband, Curt. I lived with Magen back east when she was dating Curt right before they got married. I haven't seen them since Shane and I got married a few years ago. They were able to attend as they were in LA for a convention. It was wonderful having their support as well as Jen from Children's of Los Angeles, the NICU nurse who was Primary for Jonah.

Thank you all who attended and supported us.

Solid Woes

So it seems that our dear Noah is not doing well with solids. Not at all. He has managed to throw up almost every feeding of sweet potatoes. He threw up at least a couple of pea and green bean meals as well but by far sweet potatoes are the worst. I know if he were allergic we'd be seeing rashes and other issues but oh my gosh, could his system just not be ready?

I guess this will be another question for our GI Clinic on Thursday.

Sadly, Noah hasn't gained weight in the past week and a half per the ped's office yesterday. This past week has been a nightmare for feeding, an absolute nightmare. He is teething on top of everything else (he has one cutting the gum on his bottom jaw right now) and I am sure this plus a cold has ruined his eating. Our public health nurse came today and weighed him on her scale but she showed a 4 ounce gain, I am sure that is just a difference in scales but our ped was talking about seeing him possibly seeing him again in two weeks.


I can't find any sippy cups he likes and I did try feeding him straight from the bottle today which he enjoyed but didn't get much down. I also tried syringe feeding but that only resulted in getting a couple of ounces down.

So, onward we go. I hope to find a solution soon and I wish Noah would wake up and decide food is GOOD!

Jonah is doing well. 16 POUNDS! I could hardly believe it. He is officially over 1 pound heavier then his brother. Of course between Noah's poor eating, burning of extra calories from his pulmonary situation, higher activity level and three diuretics no wonder Jonah weighs more!!!

Shane took Jonah to aquatic therapy today and said he seemed to enjoy it. He will be working on the same PT/gross motor skills that he does every Friday only with the benefit of working out in a heated pool.

Mr. Hyde has returned with a vengeance. We still do not know what is causing Jonah's fussy period but Shane is now Jonah's best friend at night as he sits up with him trying to get him to calm down enough to go to sleep. I hope this phase passes soon! Our ped had nothing to offer nor did the public health nurse today. Shunt? No, there would be other obvious signs. Colic? Well, from what I've read that is basically reflux and we have him on meds for that. Anxiety? Possibly.

The blessing went wonderfully and we thank those who attended and supported us. Both boys were blessed with very sweet blessings from Shane.

It has been wonderful having family in town and it has been a huge boost to my morale. My sister extended her flight through Saturday morning and decided to stay a few extra days, Grandma Langston goes home tomorrow and Grandpa Langston is here for a few more weeks.

I'm grateful for all the positive support around me right now as life has been a bit rocky. I am most grateful for the gospel and peace that I have in my life from the power of prayer and the knowledge that God loves me.

I know through trials you learn many things and sometimes in the refiner's fire when the moments seem darkest you learn how to really rely on God.

I have learned that once past this period in my life I must focus on being more positive about my circumstances. I absolutely must for my own sanity and health. I have spent several very difficult months not really understanding why my life has taken this path but in a moment of clarity this past Saturday I realized that God is in control and loves me dearly and that I must trust in his plan. I must believe that he will guide my family and care for me and the revelation came to me that I had not truly turned to him for support in too long.

It is important for me to recognize this as I know a new attitude is needed by me to overcome this bump in the road and to continue on with the guidance of God.

God is great, just as my sister was saying to me today. God is truly great. He has a plan for each of us, even when we don't see the end result or instead see a bend in the road that we think should not be there God has better plans.

I was listening to a talk on the BYU channel Saturday night from a brother of the church addressing the importance of surviving "family crucibles." He talked about the importance of making the best of things when they don't turn out as one expected. He also talked a lot about God's plan for families and the importance of knowing that even with life altering changes God always has a greater goal in mind, whether that be greater compassion, love toward mankind, greater empathy or just greater faith.

I've tried to surround myself with positive thoughts right now and I leave the BYU channel on most of the day to surround myself with the spirit and uplifting talks of the church. I have found great comfort in this.

I thank each of you for supporting our little family through the past few years. We are so blessed in family and friends. Keep praying for us and for the boys. Shane and I need the strength, courage and sanity to stay the course and continue forward in this great mission.

Friday, August 22, 2008

Thanks to Shane for his sweet posting. He is too generous as he himself has sacrificed just as much as I and some days he carries a greater load as he works all day and comes home to help all night. He has done everything in his power to relieve me and try to make sure I keep my sanity. So, to Shane...we love you for all you do for us every day.

Just a quick posting. Noah's appointment to Fresno on Tuesday was half helpful. The OT we met with really did not address Noah's bottle aversion. She assessed his ability to tolerate/eat solid foods and determined (to no surprise) that he is perfectly capable of eating solids. She did ask we starting using the NUK brush to brush his gums/tongue to stimulate his tongue to help with forming boluses, etc.

I appreciated this information but all she said about his bottle feeding (I fed him in front of her and of course he took a few sips and then started trying to climb out of my arms and push the bottle away) was, "oh he is bored, time to start solids." What??? He still has to take liquids and from his bottle! She told me that if he didn't eat that much to "not take it personally." Huh?

Oio. So I thought it was a half helpful appointment but not what I was looking for.

This week has been nuts, kind of a long, difficult week for me. I am grateful for good friends who have stepped in and supported me this week. My good friend from church has been over a couple of times this week to check on me and stayed last night to help with dishes, etc. Her company was life saving as I have really been struggling this week.

I'm looking forward to brighter days ahead and grateful for the progress my boys are making. We still have a ways to go but we pray for the best with both Noah and Jonah.

Jonah was a bit grumpy with his PT this morning but liked his vision therapy this afternoon. He is so funny! I feel badly as this week has been so topsy turvy I haven't been able to work out with him much.

We did start Noah on solids. He is now trying out green beans as the dietician from the GI Clinic encouraged us to start with "greens" first as babies aren't likely to take them if you start with fruits, etc.

Grandpa and Grandma Langston as well as Aunt Valerie are all coming down this weekend. They will drive down from Los Angeles Sunday morning for the boys' blessing. We will miss Grandpa and Grandma Hanna but we know they did everything they could to try and come and they will be with us in spirit. =)

Thank you everyone for supporting us and keeping up on the boys. Keep voting on our poll!

Monday, August 18, 2008

Thank you

Hello everybody,

This is Shane (Noah and Jonah's dad). I don't normally blog. In fact, I rarely let people know what I'm thinking. But, I wanted to take a minute and say thank you to Michelle for being a good mom to the boys. Strike that, great mom. Caring for our sons is complicated to say the least, but Michelle manages to keep everything on track. She is always vigilant. Constantly assessing and determining what they need. Just keeping up with the Doctor's visits by itself is a monumental task. Between the two of them, the boys have as many as 7 appointments some weeks (some of which are a 2 hour drive to get to). How she keeps the appointments, gives medication (every 4 hours), gives bottles, changes diapers, does laundry, cleans the house, makes herself lunch/breakfast, and keeps her sanity is beyond me. I'm glad for the wonderful mom she is.

I don't think that half explains it. But, thank you Michelle.


I planned to wait until after the boys' blessing but I couldn't resist sharing some photos of our beautiful little men in their blessing outfits. We are finally holding a private church blessing this upcoming Sunday. Because the boys are in isolation we chose to not have the blessing during our Sacrament meeting with the entire congregation but instead are holding a private ceremony. I loved these photos and wanted to share. I hope you enjoy them as much as I do!

Saturday, August 16, 2008

Don't forget to vote as part of our poll to see which boy you think looks like us!
"Let God's will prevail."

I was struck by this quote as I read through an article of a woman in Egypt who recently gave birth to septuplets. When questioned if she wanted to undergo "selective reduction" (to reduce the number of fetuses) she told her brother that she wanted to keep the babies and let God's will prevail.

The reason I am posting tonight is because I wanted to talk about a sensitive topic for me. A lot of us mothers who belong to my micro-preemie support group are sometimes approached by friends, family and complete strangers and asked why we chose to let our child live when so many disabilities may be possible because of their extreme prematurity. Others are inappropriate enough to actually suggest we shouldn't have allowed our child to live.

My response is now and will always be that we chose to let God's will prevail. Does that mean I don't mourn what our outcome may be or what my children may not accomplish? No, it does not mean that. It also doesn't mean that I don't have days when I dream of what they could have had if they weren't born prematurely. It would be a lie to say that I haven't had those thoughts and others. But my mind always comes back to the night when we found out how severe Jonah's bleed was, I've mentioned this before in my blog. I remember the doctor actually struggling at the local NICU here telling us that his bleed was the most severe and that the risk for disability was high. I remember Shane and I physically shaking and breaking down in tears at the news, both of us in shock. His response was, "Knowing this do you want to change the course of treatment?" We both looked at him and said, "It is in God's hands." I also remember that around that time Noah was barely holding on, his breathing was so difficult and his lungs so fragile. Although Noah did not suffer a severe bleed he by far was more critical then Jonah several times during his NICU stay, at one point they were worried his heart was damaged as a result of his pulmonary situation.

It was then and is now in God's hands. I have said it so many times but I knew that if either of my boys were to survive the seemingly impossible it would be God's will. I still remember when Jonah was finally transferred down to Madera because his upper intestine had ruptured, the NICU was panicking as they did not know if he could survive being switched to a regular ventilator off the high frequency oscillator (transferring is very dangerous when a child is on a high frequency breathing machine). Hours before his transfer his sats suddenly stabilized enough that they were easily able to switch him over to the conventional ventilator and during the switch he actually was breathing on his own. I remember the look of suprise on the face of the doctor when he told us this.

It was then and several times through the NICU after that I knew God wanted Jonah and Noah to live. They both have missions to fulfill, whatever they may be. Will it be an easy road? No. Does that mean that the possibility of disabilities is an easy concept to accept? No. But in the end, knowing God's will was for Jonah and Noah to have bodies and be here on earth gives me comfort, even in my dark days when I question why God would put any child through this.

I have to simply breathe and "let God's will prevail."

Friday, August 15, 2008

So here is a fun little poll that I have been meaning to put up for some time. We have had lots of varying opinions about who the boys look like, so now it is your turn! Does Noah look more like Shane or myself? And Jonah? The results will be fun to see! The top photo posted under the poll is of Michelle and the photo underneath is of Shane.
Noah still has his yucky cold. We actually got him down to 1 liter yesterday during the day and he did well but last night was exhausting. We were up and down because he was very restless last night and every time he moved his Pulsox was set off, plus he was sleeping so deeply that he was saturating again in the low 90's/high 80's. We turned him about mid-morning to 1.5 liters again and he kept doing the same thing until finally at 4:30 in the morning we gave in and put him through the ordeal of suctioning his nose (he hates this more then ANYTHING). I got out a decent plug from one nostril and that seemed to take care of the problem. He is back down to 1 liter today but he definitely sleeps much more deeply at night and that is when we have more problems with his desats. He hasn't run a fever and aside from yesterday taking a couple of long, afternoon naps he is his normal self (aside from some minor congestion).

I keep praying this is the worst of it. Hopefully come Monday Noah will be feeling 100% better. I keep dreading the upcoming winter months as I can't imagine what will happen to his oxygen needs if he does develop pneumonia. We are hoping with continued isolation and the RSV plus Flu shots we'll keep the boys relatively healthy through the upcoming months.

In other happenings, Jonah had his helmet casting today!! We are expecting his helmet to arrive in the next week or two as it is made out of state. The orthotist did say that Jonah's head shape is the most difficult to reshape so he predicted Jonah would be wearing his helmet for close to 5 months and could easily go through two different helmets during the process. Just one more crazy thing to add to our list of appointments. I keep hoping I don't go insane with all these appointments coming up in the next few months. It's going to be a bit nuts around here but hopefully we will manage!

Supposedly we have a second weekly PT appointment lined up to start August 26th. Although today I found out our therapist is starting some management seminar on Tuesdays and she is trying to find a sub to take her Tuesday appointments so after all that we may actually have to fight for a second therapist appointment every week. Terrio has got to get more therapists! She did say they just interviewed someone who will be starting soon but they have a serious shortage right now!

I have been disappointed in Jonah's vision therapist. She is young, no degree and I really feel that all she does is come to the home and play with Jonah which is something I could be doing on my own time. The micro-preemie group I belong to shares notes all the time and one mother that I am particularly close to sent me a stack of notes/therapy suggestions from her vision therapist. It was then I realized how little ours is doing. I am supposed to have a home therapy plan (although our PT just finally got me the boys but I always talk to her about what I do at home and ask lots of questions about things I want to improve and what can I do, she has always been helpful but this is the first time she actually put anything on to paper), goals to work on with Jonah as well as an ongoing assessment of his condition. I asked this gal all kinds of questions last week, including about Jonah's current goals and his progress report. We just switched therapists as she is from our area and just recently finished training but she couldn't even tell me off the top of her head Jonah's goals! Her response was, "I have the progress report and I have read through it but I couldn't tell you his goals without it." WHAT? Isn't that your responsibility? Or shouldn't you at least bring in your lesson plan or the report with you so you know what goals you are working on?

Oh my, I was so disappointed. I have had several discussions with Kern Regional as they are providing the therapy. Our case manager did say they have another developmental optometrist here in Kern Regional and if our therapist doesn't start showing a better grasp of what to do for Jonah and me then we can switch therapy. The huge down side is that of course, this individual does not do home visits. Although today I was talking to Jonah's therapist about my disappointment with our home visual therapist and she mentioned the local development optometrist and said she was really incredible. So I called Kern Regional back and talked to them more. As much as I HATE adding one more appointment out of the house to our list if I don't see an improvement with our vision therapist in the next few weeks I am going to have to switch therapists.

I just wish I had someone more advanced working with us instead of someone who has just got out of training and doesn't seem to be particularly on top of details. I want the best when it comes to therapy and for Jonah's vision we need some improvements.

I told her last week she had to bring Jonah's progress report next time as I want her to go through the report with me and discuss goals (shouldn't she already be doing this?) plus I really want to see her lesson plan (oh and get this, she told me that she really doesn't change the plan much week to week...only if she thinks Jonah has accomplished something will she change it. What? How in the world do you monitor progress? Oio!)

So that is where we stand now. I am also excited because Jonah starts aquatic therapy next Friday! Yeah! Shane has agreed to take him to the session as it is the end of the day. I think it will be fun for both. I hope too to see additional improvement in Jonah's progress with the therapy.

So onward we go. I surely appreciate friends in the local area who have stepped up and offered to help. Thank you everyone!

Wednesday, August 13, 2008

I forgot to mention yesterday that Noah weighed in at the ped's office at 14 pounds 8 ounces! Hip hip hooray! Good job Noah!

Tuesday, August 12, 2008

Noah has a cold. That was the determination after two hours at the doctor's office. So now we are praying as hard as we can that it will not turn in to pneumonia and in the mean time we are watching him closely. Every one say an extra prayer tonight!

Love, Shane and Michelle
Well, as I have always said....when things start looking up something else happens. =) Noah started bouncing up and down with his sats about 48 hours ago. We've been so excited as we have weaned him down to 3/4 liter during the day on his oxygen. Sunday night I bumped him back up to 1 liter and left him there all day yesterday. Last night and this morning he was still hanging out in the low 90's/occasionally hitting 89 and I knew something was up. He has been at 1.5 liter today and we've started the circus of Albuterol treatments.

I called the pediatrician to try and speak with his nursing assistant. This has kind of been Noah's cycle for the past several months, he makes progress and then starts getting sick. Oio! At first she and I had decided to wait out the day and see what happens. He was running a slight fever (99.2) and that upset me but I guess this nurse said anything under 100 is very mild and to not worry unless it reached above 100.

I still placed a call to his Pulmonologist Clinic in Fresno and spoke with a very unhelpful nurse. I talked to her about what was going on as well as the fact that we were never able to wean him off one of his diuretics several weeks ago like the doctor had wanted. Noah's diuretics haven't been adjusted to his weight/age since he came home back in April so my question to her was, he obviously still needs them so why hasn't anyone reviewed to see if the dosages need to be upped? She wouldn't offer any advice and insisted I first go to our doctor and he would have to call them. Oio!!!! I was so frustrated as I have called them before and in the past I felt they have been more helpful and at least have consulted with the doctors in the clinic but this nurse was just plain rude.

It didn't help that I was already walking on a thin thread due to the fact that I cancelled Jonah's extra GI appointment Thursday (as his new laxative appears to be working) and when I went to confirm the appointments for both boys on the 28th I was told they had inadvertently taken them off the schedule. WHAT! I was so upset. My sons have to be seen and we live two hours away not to mention how long it takes to get in to this ridiculous clinic! So after much fussing they put the boys back on the schedule on the 28th. I called back later to complain to the supervisor and she was very understanding and promised it would not happen again.

So between that and the rather rude nurse at the Pulmonology Clinic I was ready to pull my hair out. I was so glad when Shane agreed to come home and take Noah to the clinic so Dr. Nguyen could assess him and order a chest x-ray.

It is so hard to not get upset with the collective group of medical professionals in this area, that includes our therapists. Just this past Friday I showed up at 7:30 AM, just to accommodate the therapist, so she could squeeze both Jonah and Noah in only to find out she had not turned in her progress report on time to our insurance so they had not issued a renewal for Jonah. So guess who did not get his second therapy appointment last week? I was boiling mad. I was very nice to her but later I talked to those that process the paperwork and asked that they please try and assist Karen with getting her paperwork in on time so our insurance can do their job. I can't be showing up to appointments that aren't going to happen!

OIO! So, I am sorry to rant and rave but I feel I've had one too many incidents to not feel that a bunch of ingnoramuses are working as a collective whole for the medical profession in Central California. I hope to be fortunate enough to be proven wrong by the time our lives move on from this area. Oh, and there is more news coming on that front which I am not yet at liberty to discuss although I can say it looks to be that we will be staying in Bakersfield for a couple more years.

I hope and pray that at the end of this experience I will have a greater vision of why we stayed so long when some days I just don't understand how we ended up here in the first place. I am trying to be positive and Shane does a good job at going through the list of services and other items that we have and would only have by being in California. It is true, we live between Los Angeles and Madera and both places are nationally recognized for their children's health care. We also have the wonderful regional center who has assisted us with countless things. So I am trying to remember these blessings but when I have several specialty appointments out of town during the month and I make the day long commute with two cranky, screaming boys I wonder why we couldn't be just a few miles closer?

God knows all, this much I cannot deny and I don't always understand his plans. In the end I can hope to understand and will look forward to the day when I can look back and say, "So that is why!"

Shane is still at the pediatrician's office (hopefully receiving good news, I don't want a call saying they are taking Noah up to the hospital for monitoring) and I am here with sleeping Jonah.

We'll keep you posted as to any changes.

Monday, August 11, 2008

Does anyone know how to get two little boys to look at the camera together and smile at the same time? Ha ha ha! I've given up on that ever happening.

Wednesday, August 6, 2008

Shane took Jonah this morning to Fresno to meet with his eye specialist. She was pleased with his progress. Shane did ask about his pupils and she said it is normal after surgery for the pupils to recover but Shane neglected to mention they have been that way for some time. She did mention that we will watch this carefully over the coming months and I have heard from other micro-preemie moms who've said their children may end up needing surgery to enlarge the pupil, so we will see.

She did say that because Jonah still has some shaking he may require an additional surgery in the next few months. She plans to see him in two months. During that time I plan to get us up to Los Angeles so we can see the original surgeon who did Jonah's ROP surgery back in December. I want his opinion on what is going on (he is world renowned and amazing) and to see what he recommends.

Shane said she did try a few lenses with Jonah to see if she noticed a difference in his vision but she said right now it would not make much of a difference to try glasses so we are putting this off until the next visit.

I am curious to see what Dr. Lee will say about Jonah's eyes. I plan to go with or without the help of our HMO...even if it means out of pocket I want him to see Jonah.

More to come.....

Tuesday, August 5, 2008

So the public health nurse that met with the boys a couple of weeks ago made a referral to the state funded "Medically Vulnerable Infant Program." A nurse from the program contacted us last week and she came yesterday to assess the boys. She will continue to come twice a month to weigh, measure and answer any questions I might have as well as facilitate communication between specialists and our pediatrician.

Jonah weighed in at 14 pounds 12 ounces and Noah 14 pounds. However, Noah is almost an inch longer then Jonah! I keep telling him he has to catch up to his brother in weight! He is our long, skinny boy!

I was actually a bit disappointed at Noah's weight gain but we continue our battle to fatten him up. We are now attempting 35 calorie formula (with the Benecalorie booster) to see if we can't get him to gain a few more rolls. Of course his oral aversion does not help matters and we just keep working through things but some days it seems all we do is try and get food down that boy!

The nurse was actually really impressed with both boys. She said she almost thought they had to be 28 weekers because she was so impressed with their capabilities and how they looked, etc. She even commented more then once that she could not believe Jonah had a grade IV bleed as he was pretty much babbling the entire time she was over and chewing on his thumb. She mentioned that from what she has seen with the grade IV bleeds she really was impressed with what Jonah was doing, yes he had his delays but he was kicking his legs, babbling, chewing on his thumb, picking up a rattle to bring to his mouth and so on and so forth.

We really are so excited for Jonah. Yes, he still has a long ways to go but he has made good progress! He has even started to smile more and babble more at us since his surgery, I know the extra vision has really helped stimulate his senses which is wonderful! He grabs for things more (bangs at things a lot) and gets so excited over things! He still doesn't focus perfectly straight all the time and I do worry about the lack of dilation with his pupils but I am going to ask about this tomorrow when I go to Fresno to meet with his specialist. I also think glasses would really help him so I am going to ask tomorrow again about getting him glasses. We hopefully start aquatic therapy soon as we just got the paperwork today. I think Jonah will love this!! Shane is going to try and take him since it is end of the day. Once Noah is off oxygen and more hearty hopefully we can start him too. Our lives are quickly becoming very busy, by September Jonah will have PT (hopefully twice a week working on this still), OT at least once a week, Aquatic Therapy once a week as well as vision therapy (not that impressed with this therapist but more on that later).

I am supposed to hear from the Occupational Therapist in Fresno to schedule an assessment for Noah but I have not heard anything in the past few days so I may need to call on that this week.
Noah has started arching his back and pushing himself up to his knees and hands, one step closer to crawling! We still need to work on him sitting by himself. There are always goals to work on!

We tried Miralax over the weekend and Jonah does seem less fussy at night but he didn't poop for nearly four days (I am sure the switch in laxatives did not help) so today he got a suppository but it seems like things may be back on track (hopefully) from this point forward.

It was great hearing such positive feed back yesterday from the nurse. Like I said, it is hard to remain positive some days and you wonder if all your blood, sweat and tears are really making a difference.

One thing I have learned from my good husband and all our close family members, we can't stop believing in the boys' capacity, especially Jonah. Even today our physical therapist was saying she has seen children with grade IV bleeds walk and that we must not stop renewing our hope for Jonah. Again, early intervention/stimulation as well as that all important Neuroplasticity play big roles in outcome. I was talking to my father the other day, who is always a great moral booster, and he was saying that he has the highest of hopes and thinks of Jonah like he would any other baby boy. I agree. I won't give up the hope that Jonah can accomplish great things. I treat him just as I would Noah and have the same expectations and I know this important!!

So onward we go, I will update the blog after tomorrow's opthalmologist appointment.

Sunday, August 3, 2008

Blowing kisses! I had a laugh when Noah managed to blow a bubble too.

Have you EVER seen a cuter baby? I think not. Jonah having fun with his rice cereal, he truly enjoys rice cereal time. Noah is pretty indifferent but Jonah has so much fun!

Friday, August 1, 2008

Cute photos of Noah: 1 & 2. Ummm, Houston....we have a problem. Noah getting tangled up in his cords after rolling around on the floor. 3 & 4. It's a puke fest! Noah covered in lovely throw up and his adorable after bath photo, does this look like the face of a little boy that does anything wrong? I don't think so.

Cute photos of Jonah: 1. Bath time fun 2. Yummy fingers! 3. Sleeping angel (does any one else love watching sleeping babies as much as I do?) 4. Eating Noah's O2 cord, that got a good laugh out of me when I found Jonah chewing away on Noah's oxygen cord!

Mr. Hyde has returned with a vengeance. Bless our Jonah. I was on the phone with the GI Clinic this morning trying to figure out what could possibly cause him to be in so much pain at night. In doing process of elimination, the only thing that has been newly introduced has been the Lactulose so I am trying to get them to agree for the time being to switch him to the Miralax laxative.

They are making yet another appointment for Jonah to go in on the 14th of August. I guess our GI doc is on vacation until October so the next couple of appointments will be with the PA. Hopefully she will be helpful. I think with this next appointment they will order a new set of tests.

We still don't know if he has a dairy intolerance. I want to switch him to a soy formula but the nurse did not seem to be pushed to do this yet. If the soy formula doesn't work there is a formula called Neocate but oh my, it is expensive!! So hopefully we'll find the solution not to be something that will break the piggy bank.

I hope to hear back in the next hour or so from the nurse. I want to get this Miralax ordered soon if they agree to try him on a different laxative as I told the nurse we can't live like this for the next week and a half until we can get in to the clinic. Jonah is horribly miserable and just screams and screams for hours.

The only thing that comforts him is a warm bath but the second we take him out he starts up again which in and of itself tells me it is GI related.

We hope to get this resolved soon, soon!

GOOD NEWS (I must emphasize this as sometimes I feel like we have so many challenges that the good news is slow coming): Jonah is making progress with his head control! I have been trying to work out 2-3 times a day with him and this coupled with his surgery, which I know has helped his vision, have helped him make some serious progress. His therapist was so happy this morning and praised me for what I am doing (it is nice to be praised as sometimes I get so saddened that I am not doing enough and not making a difference). She said all we are doing is helping him progress. I know his surgery helped, his eyes are still not perfect BUT they are better. We need to keep working on his left hand as he has a tendency to keep it closed when grasping for objects. We knew this was the side of his body that would be affected as the most severe bleeding was in the right lobe but as our therapist reminded me today, thank goodness for things like neuroplasticity! (Neuroplasticity refers to the changes that occur in the organization of the brain as a result of experience. The concept is that neuroplasticity pushes the boundaries of the brain in response to changes in environment. This is why early intervention and lots of good stimulation are so important in high risk infants).

Also, I asked about aquatic therapy and she agreed that Jonah would really enjoy and benefit from it! I'm pretty sure our insurance won't pay for this plus PT but the local regional center will cover the cost so we are getting paperwork processed to start Jonah in aquatic therapy. We also are getting a referral put in to our insurance to start occupational therapy (most likely will start up in September as I guess Terrio's main OT is on maternity leave until then) and I told Jonah's therapist today we need that second PT appointment every week. She is going to try and work with us but I think we'll end up with a different therapist for the second appointment as Karen is so overloaded (they are short staffed and trying to recruit additional therapists).

So amidst all the craziness this week we have had some very good steps of progress, small steps yes but nonetheless steps of progress!

Hip hip hooray!!!!
I had to share this on my blog. I know probably some think I am making it a personal mission to inform others about the importance of tolerance when it comes to children who have disabilities and the answer is, yes! I am! If I can help one person understand how one unkind comment can break the heart of a grieving parent or a struggling child then I have made the world a better place for all those who have children with disabilities and I have helped create a brighter future for my sons.

The following happened recently to one of the micro-preemie moms from my Yahoo! group (again, edited for brevity and to emphasize what I felt was important) whose son just received his first wheel chair. He has Cerebral Palsy. I want you to read through this and think of a way that you can better help those in your family or around you accept children who may "look" different due to a disability. Do not judge the situation or what was said by either parent but look at the overwhelming feeling of sorrow that this poor mother felt and how with the right kind of education the whole situation could have been avoided in the first place.

It wouldn't be right of me to not say that I am fortunate enough to have an amazing network of friends and family and almost every one of you would never dream of saying something like this or you would address the situation if your child were making this comment. I still however, wish to share this with you because this is what parents that have children with disabilities face every day. Every day. Imagine the pain that they must shoulder and yet still smile and be a "warrior" in the face of great grief so they can help their child learn that difference does not mean ugliness, that different is beautiful and your spirit and soul are what matters most in the sight of God and family. It indeed is a great task and I know my time is coming soon in which I will bear this myself and I hope and pray that I will bear the task well: you all know we just got [my son's] trial wheelchair YESTERDAY. Well I always take him for a walk at night. I usually go the same route so people in certain houses know us and say hi. Well I walk past this one house and their son is in the yard with their dog. The mom is out there on the porch. As I walked by I heard the kid say "mom, that kid is retarded". I was just saying how one day I am going to snap. I felt my face go red and I just wanted to scream at him! I stopped and turned to him and said "what did you say?" He said, "I just said he was a retard". I said "he is not a retard. Why do you say that?" he said "cause he is in that chair." I said "that doesn't make him a retard." It was THEN that the mom said to me "just keep walking". She didn't say ANYTHING before this! I said, "I will keep walking but you should teach your child some manners". She then said, "he has nothing to learn, you just can't handle the truth". I had to start walking. I started to walk....about ten feet later the tears came. I was sobbing by the time I got home. I cannot believe this. I have seen this lady and her children MANY nights and it wasn't until tonight that he said that. I was having a hard enough time with the whole wheelchair thing. My son is NOT a retard. I am just so emotional about this whole milestone of getting a wheelchair. Why can't people see these kids how we do!?