Team Joshua

It's the time of year for the March of Dimes "March for Babies" (formerly WalkAmerica).
We have started Team Joshua for the March of Dimes Walk - March for Babies. I have probably e-mailed most of you but I will post it here as well. We need all the help we can get. Josh and all my other preemie friends have been lucky. They are the ones who made it. There are lots who don't or who have lasting physical issues. Wouldn't it be great to stamp out prematurity? This is for all my preemies. I have links to a few that are still in the NICU.

Perhaps in the future prematurity will be on the decline instead of on the rise. More and more babies are being born prematurely. This is for the babies who have not made it, for those who have and for those who will be born prematurely in the future. We are encouraging each of you to make a donation and/or walk with us. Please let me know in advance as we are getting Team Joshua T-shirts to wear the day of the walk. Send me your size if you are going to be joining us. If not, please find a place in your hearts to make a donation. It doesn't matter how big or small. Every bit counts.

So join us. Above is the link to our team site (click on the march of dimes banner)You can choose a walker to sponsor, join our team or just donate to the team.


We need to make a difference!

Opthalmologist Visit

It's amazing that these doctors can tell things just by looking. She said that Josh has astigmatism in both eyes. After reading the above article, I will have more questions in April when we see her. She also said that Josh's right eye drifts a little, which is the reason that she wants to see him back in three months. If the drifting gets worse, she will have to prescribe a patch over his left eye to strengthen the right one. All in all decent news. Will Josh have to wear glasses? My guess is eventually, although she didn't say so today. That is definitely going to be one of my questions next time. I have astigmatism in both of my eyes as well. That is probably the reason that I have worn glasses since the age of 5. So one more doctor that we get to see routinely!

Preemie Follow-up visit

Josh went to his Preemie follow-up visit. Yale does two, one at 6-months adjusted and one at 18. The great news was that the "test" was performed by one of our favorite fellows Yesid. It was great to see her. They did a series of tests with toys to see where he is developmentally. It is mostly a study to see how preemies do after they get home. Josh is on track socially (go figure LOL) and a bit behind even his adjusted age for gross motor, fine motor and cognitive. Basically when most babies are reaching certain milestones, Josh was busy just trying to grow/breathe/live. They do believe that eventually (sometime before age 2-5) he will have caught up totally so that is good news.

We have he pedi opthalmologist on Thursday. Hopefully that will go well!

Jan 19 Pictures

Here are some more pictures for you. I know that you like these best!

January 19, 2008

Last weigh in he was 15 lbs 11 oz. He is still not on the charts, but he is getting there!

We have lots of appointments coming up. We have a first appointment with a pediatric opthalmologist. Hopefully that will go well. He doesn't see the eye surgeon again until May. We have GI again this week. She is just working on his weight pretty much. We have an appointment next week with Yale. They have a preemie follow-up clinic. It's about an hour and a half with a bunch of specialists I think who will go over his health and development and see where he is. We know he is behind in lots of things but I am not worried. He will catch up. I can see by his actions that he is going to be just fine! My insurance has now denied his home nurse visits. They say it's because he isn't homebound... okay he never was! Pediatrician is appealing that decision, but so far, no change. Sucks because she was weighing him every 2 weeks and giving him his synagis shot. Now we will have to go into the office and be exposed to even more germs. Do they even realize what that means?

So that is all that is going on. I have some more pics that I will post as soon as I get rid of the red eye!

Love to all.

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11 months old today

Wow, can you believe it. In one month our little man will be a year old. He is thriving and doing so well. We have so much to be thankful for. Although his lungs are still fragile, he still has moderate Chronic lung disease and is dealing with GERD, we know he is doing well. We still have a long way to go. He is still delayed developmentally. He is not rolling over like he should (he does it when he feels like it!). He is a little behind even his adjusted age, but I am not worried. I know that he will catch up!

Josh has had two colds or something viral. The last one had us giving him breathing treatments every few hours to help with his cough/breathing. Luckily both times have been mild. Thank goodness for the Synagis shots (this shot is basically giving him some immunity against RSV. It's not a vaccine, but an immune booster). He gets the shot once a month to protect him. I am sure that was part of why although he has gotten something, he hasn't gotten really sick.

I have to type this part all over because Josh somehow grabbed my mouse and deleted the below passage! Little booger!

There are two preemie mama's/daddy's out there who could use some prayers. Ana and Joe had a 25 week old little boy Jay who is 5.5 weeks old. He is still on the vent and hopefully will be weaned soon and get on CPAP. He is a little fighter! http://schmetzers.blogspot.com/

Niki and Brian have Sydney who is now almost 2 and a half months old. She is just getting over an RSV infection and is doing really well. She is almost on the road home soon. I am sure her mama and daddy would love for some prayers to send the little one home! http://sydneysjourney.blogspot.com/

As soon as I get some I will post some new pictures. He is such a cutie blowing raspberries and babbling away!

I hope you all had a wonderful new Year. We are hopeful that 2008 will be a great one for us!

Merry Christmas

Merry Christmas to all of my friends. Josh got lots of presents from Grammy and Grampy and of course from Santa. More than a 1o month old should have! Can you believe in 6 weeks he will be a year old? I still can't believe it! He is doing well. He has some sort of virus right now.. could be RSV, Adenovirus a plain old cold... whatever it is, it's in his lungs and we are doing breathing treatments every 3-4 hours. All in all he is in good spirits even though he isn't feeling the best. Smiles through the coughing fits. He is definitely a ham lately.... entertains us all day long! He laughs, sticks out his tongue (I taught him that.. not so sure that was a good thing lol), blows raspberries, spits and all kinds of other nice things!

Hope everyone has a safe and wonderful holiday. May you all be blessed as we have been!

Dianna, Dave, Arran & Joshua

Christmas Pictures and other things

Hi all. Josh is doing really well. He is totally off oxygen (and it's official). He is still on his diuretics and will be until he outgrows it, she thinks springtime. He will be on meds for GERD (acid reflux) for awhile. He is eating well and still gaining. Last weigh in was 13 lbs 14 oz. He had his flu shots and his first synagis shot and did fine. He will not be a happy camper by April though!



Our friend and personal photographer took some pictures since we can't do things like go to JC Penney or Walmart for pictures. Of course they are amazing. She also did a collage for our Christmas cards. I won't post that one here until after I mail it out for those of you who are personal friends and will get one in the mail! But here is a sneak of the little Santa and our oldest who is starting to look more and more like a man and no longer my little boy. How time flies!

Happy Thanksgiving

We have so much to be thankful for and too many to list, but I will try!

• We are very thankful that Josh is here for his very first Thanksgiving. That of course includes modern medicine and the wonderful staff at both hospitals.
• Josh is now over 13 pounds and still gaining!
• I am thankful that we have not met our lifetime CAP for Josh and that we still have medical insurance.
• We are thankful that he is now off oxygen.
• I am very thankful for my family and awesome friends. I couldn't have made it this far without drugs without you all. There was a time when I really thought that I was going to need something for depression. Michele and wine helps lots!
• I am thankful that I married the man of my dreams and that we went through this together and are stronger for it.
• I am thankful for my son Arran. He is at the age where he drives me completely insane, but I love him with all my heart and he knows it! He also helped me make it through this without even knowing it!

So to you all, have a wonderful and bountiful day. May you stop for a second and appreciate all that you have and should be thankful for. This is not just a day to "engorge yourselves on food" as my son thinks, but a day to count your blessings and be thankful, not just today but every day.

Preemie Article Series

Here is a series that has been written on prematurity. I haven't read it all, so I am not sure if it has anything negative in it.

Day 1:

Day 2:

Day 3:

November 12, 2007

Well the respiratory therapist came on Friday and apparently our oximeter can be downloaded. Had we known, we would have had Josh on the darned thing! I guess it can contain lots of stuff (at least this one) so Ben is bringing a different one today so that we can do the overnight study again since we didn't really have Josh on overnight with our other one.

We didn't get weighed on Friday. Mary our nurse wasn't feeling well and didn't want to bring any cold germs with her. Same for OT today. Wendy has a sore throat and it's better that she doesn't come if she is sick.

We are still waiting on our Synagis shot. First the pediatrician faxed the prescription to my Medical Insurance. They weren't sure that they would be the ones covering it, so they contacted my regular Pharmacy Insurance and they said that they would cover it. Peds filled out all of the necessary paperwork and got it back saying that they don't cover this because it's an injectable, and that they need to send it to my Medical Insurance. Go freaking figure. I thought that was probably the case since they were the ones that covered my Lovenox injections both times I was on it, but what do I know. So now we are waiting on my Medical to send the shot to the pediatrician. I will be on them by Wednesday if I haven't heard anything.

There were confirmed cases of RSV already in October, and I would like for Josh to get his shot ASAP. As it is, the end of the month he needs to get his 9 month shots AND his second flu shot, so he will not be a happy camper. Check out this link for information on RSV.Here is another if you really want to know more about it. RSV in preemies can cause hospitalization and/or death. The RSV vaccine will not prevent Josh from getting RSV, however it could prevent him from getting VERY sick. We are doing our best to prevent him from being exposed which is basically keeping him away from places with lots of people. If my friends are sick or their kids are sick, we avoid them too. Sucks, but this is the way it is. We are avoiding the big family gatherings for the holidays for this reason.

Josh does not like the pear nectar but LOVES prune juice! So we are giving that to him to help keep him regular. He still isn't having daily poops! I think that's it for now.

November 6, 2007

Josh has a "garden variety" cold. He has the sniffles and a slight cough. Doctor said his lungs sound fine. We took him in anyway just to make sure.

On a better note, Josh had his follow-up hearing test today and finally passed. We knew that, but had to get tested anyway!

The respiratory therapist drops off his oximeter tomorrow for the overnight oxygen study. Finally we may get the "official" okay to take him off the oxygen since he is already off pretty much 24 hours a day now!

Josh is 5 months adjusted as of yesterday. He is rolling over. Mostly on his side, but he has been getting all the way over to his belly! He is laughing (for certain people). Uncle Boba makes him laugh BIG, and so does Auntie Penny! Occasionally he will laugh for Mama and Daddy! So that's all for now. We have many appointments this month, so we will be updating lots! I'll take some more pictures when the baby wakes up.

Milestone!

We went to the GI doctor on Tuesday and she said that we could start introducing solids. She also suggested pear nectar to make him a bit more "regular". He hasn't been pooping daily (I didn't think that was a big deal) but they would like to see a daily poop. So we tried it straight (she said not to add any water) but it was not getting through even the biggest level 3 crosscut nipple. So I watered it down a bit.



Last night, Josh had his first taste of cereal! He seemed to like it. He ate about a half a teaspoon. Doesn't sound like much does it?!







Right now he has the sniffles. I am not happy about it. We have been so dilligent about handwashing and he still ended up with a cold. We will see what Mary (his nurse) says today. He doesn't sound like anything is in his chest, but we have to watch out for that. Ugh!

There are 3 posts for today so don't miss the other pictures!

Dianna and Dave

Halloween

Josh was a chili pepper for Halloween. He hated the costume and was only in it long enough to snap a few pictures. When I bought it, he was MUCH smaller. The stem (hat) kept sliding over his eyes so he was not a happy camper! We ended up walking around the block with friends(It was a gorgeous night!). He fell asleep after about 15 minutes and slept the rest of the way. have to LOVE the crisp night air! (can we sleep outdoors?? He seemed to love it!)

Promised Pictures

OK here are some pictures that I promised!

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Josh likes his bebe pod!

October 28, 2007

Josh is now 12 pounds! He has doubled his discharge weight. For most of the day now, he is off oxygen. We put him on for a few hours in the evening and he goes to bed with it on, but he removes it sometime while he is sleeping, probably as soon as I close my eyes and am not looking! The pulmonologist is going to do an overnight study probably the week after next to see how he does at night with no oxygen and then we will be able to take him off completely. This will be a MAJOR hurdle! We go to see the GI doc on Tuesday and will talk to her about taking Josh off the extra calories (if she feels it's appropriate), adjust his reflux meds and whatever else needs to be changed.

I know that some still read occasionally and there is a woman on one of my message boards who is going to need lots of prayers. She had her little one at 25 weeks. She is 1 lb 10 oz and her name is Sydney. Niki and Brian are mommy and daddy. So far she is doing remarkably well and we hope that trend continues. Keep them in your prayers for a uneventful NICU journey.

I will post some pictures later today.

Love and hugs to all!

Updates - 8 months old

Josh got weighed on Friday... he was 10 lbs 15.5 oz... almost 11 pounds. Who would have believed it! He has had OT a few times and is doing good. Still a bit behind I guess but doing most things age appropriate (for his adjusted age). Here are some pics again. I will take some more today since he is officially 8 months old! Look at those chunky thighs!

Double digits

Josh got weighed on Friday and he was a whopping 10 pounds even! As we have said before, we are thrilled with his progress. We are slowly weaning him off his oxygen. A few hours a day and he is doing fine. As long as he keeps gaining, we may be totally off by Thanksgiving.

Fall is here and in the next few weeks we will become hermits. No public places for the little guy until the end of RSV season. We will be screening visitors. If anyone is sick or even has a sick one in the family it's no visit. We don't want any admissions back to the hospital. It was a one-way ticket out of there! As much as he is looking wonderful and behaving like a perfectly normal full termer, the fact is, he isn't, and we have to be dilligent still in keeping those nasty germs away. Have a great night and we will keep you all posted. I will have some new pics soon.

Dianna

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I was playing with a new program.... which one you like best? It's all the same picture, just different edits...