Halloween 2010

From Google Halloween Pictures 2010

Happy Halloween 2010

The "Earl" cousins all visited...

From Cousins Visit October 2010

Here's the youngest Earl (well Drake...)

From Cousin Visit Waren Kirk Only

But then a witch decided to visit punishment for the second time on our parked car...remember the first time something hit our parked car?

From Tree on Car

And Jules is ok. Horrible cough. Probably eats just enough. But happy, as always!

and stepping back

He lost two pounds on the pediatrician's scale today, weighing in at 23 pounds.

so discouraging.

Joy

jules news

Jules is doing great.

After a rough vomiting illness that lasted week and left him a pound lighter, he rebounded with a new and exciting and dare-I-say normal interest in solid food!

It is the most heart warming thing in the whole world to see him EAT!

He is doing great off oxygen, but he failed his airplane test and requires oxygen for flying. We are going to try and fly this Friday with Jules and his oxygen concentrator and some nasal cannula, so wish us luck = )

We doubled his prevacid dose (thanks to heidi) and the amount of vomiting is SO much better.

He weighs 24.6 pounds and is chatting up a storm.

We have an appointment with a specialist developmental pediatrician at the end of September and another speech evaluation in September as well.

Joy

no more o2: untethered for real

As a result of the sleep study, we now know that Jules doesn't require Oxygen at night!

still no

report from the sleep study.

He had one desat that we know of, but they didn't require him to wear oxygen through the study, unlike last time when they rushed in to put him on it, so that is positive.

Joy

Jules

Jules has had a cold and fever, which means he vomits every time he coughs at night. The nights have been pretty rough going for us.

He saw the eye surgeon and everything looks like it is healing well from surgery. We will go back for one more look in August, just to be sure.

He has the sleep study on Monday, 7/5.
He has a pediatrician visit on July 14.
A follow up to the sleep study on July 15.
A swallow study on July 19
Pulmonary Clinic on July 29
Dermatology Clinic on August 3

I need to schedule another airplane test, some occupational feeding therapy with Keren, and a pre-surgical consult with a plastic surgeon who specializes in pediatric/eye-area plastic surgery. So, more on that later.

Day after surgery

Well, despite continuous blood dripping from his nose, Jules looks good. He is in less pain today and is running around the house like a little maniac this morning.

This week he has his sleep study on Tuesday 6/22 and starts little gym on Friday.

At home

Recovering.

Yay!

waiting

Surgery is done. we are waiting for him to wake up.

we have spoken with surgeon and with the anasthesiologist.

Jules has an IV for fluids. He has had some anti nausea meds and narcotics.

Surgery worked for unblocking ducts and it turns out there was some other issue in the nose that the surgeon fixed too.

in surgery now

Jules is in surgery right now.

Scott got to hold him down while they put the mask on for anasthesia.

He is wearing his little hospital gown and hopefully they will come get us and tell us it is over soon.

surgery tomorrow

Jules is having his tear duct surgery tomorrow.
Check in is at 7am. Surgery is at 9am.
No food all morning, so that should be a bit of a struggle.

He weighed 22 pounds 9 oz at the doctor last week, so he is growing VERY well post tonsil surgery!

Jules has a sleep study tues, 6/22 to make sure the tonsil surgery cured his oxygen needs at night. If he passes, we can say goodbye to oxygen! I'm anxiously crossing my fingers.

Joy

Good News!!!

Just came back from Children's and Jules weighed 21.15oz!

He weighed 20 pounds before surgery, so this is a 23.3 gram weight gain a day since the surgery and almost a 2 pound weight gain in one month!

He made it onto the growth chart for 3% for weight, but not on there yet for height.

We are going to continue on Periactin and see about doing another swallow study to see if he is doing better enough to get off the thickener we use to make his food into pancake batter texture.

Joy

update

I just got off the phone with Swedish medical in Seattle and scheduled a sleep study for Jules with their pediatric sleep pulmonologist for June 22!

So much better than December.

I am so excited to have found a way around Childrens on this one.

In other news, Jules qualified for speech therapy this morning, which really unsettled me. He has a delay in language receptive skills. So, we will add speech therapy to his feeding therapy at Boyer Clinic.

And we go for a weigh-in on Friday at Childrens hospital to see how his weight gain has been since the surgery.
And we see his pediatrician next wed. for a surgery follow-up.

Jules started Boyer classroom yesterday and was a big fan of preschool. He had 30 minutes to play in a huge gym with fun things to climb and bounce and swing on. He had 30 minutes of snack, where he actually sat down and ate some yogurt. And then 30 minutes of open play in the classroom. Finally, they finished with 30 minutes of music. He was pretty annoyed that he had to sit down for the music part and wasn't allowed to play with all of their toys during that time.

Today is scott's and my 8 year anniversary and this summer is the anniversary for 16 years of being together.

classic

So, the sleep study people called me to schedule julian's follow-up sleep study, the one to see if his tonsil removal improved the Apnea situation.

They were asked by our pediatrician to schedule an appointment in one month's time so that we don't keep him on oxygen if it isn't medically needed.

Guess what date they offered me as my ONLY option?

December 2nd.

The lady actually said, "I'm sorry, you are going to hate me for this, but the only date we have is December 2nd."

Grr.

I had to take that date so "I could get in the system."

I'm confident this will take me about twelve hours to unravel and talk to the right people to help me get a date that isn't crazy.
And I know I shouldn't complain when it is Jules who has to wear cannula and have strangers point at his stickers, etc... but I am really ready to not have a full time job scheduling doctor appointments!!!

Doing well

Jules is off all pain meds and is looking pretty good post surgery. Can't wait to weigh him and find out how much he has grown with the tonsils gone.

Keren (his OT) checked him out and noticed his hyper-extension of his neck while eating is gone. That, plus the fact he can breathe with his mouth closed, drink his bottle without pausing to gasp for air, and isn't snoring... all combine to show me that the tonsil surgery was a success. We need the sleep study to confirm it though, so we can get off the oxygen.

I feel like I'm waking up after a very long sleepy and troubling time and am looking forward to spending my time this week cleaning things up around here and getting our lives kickstarted again.

Jules is now free to do many things for the first time. I will be sure to take lots of pictures of all these "firsts" as he experiences the world.

Joy

fever

So, Jules has had an on and off again fever. he had it all last night, but it went away this morning. He also vomited on me yesterday, but had no other symptoms.

Tonight, his temp went up again, but then it quickly went back down again.

Scott is in London and tonight is my first night without him here. I am praying that Jules makes it through the night fever-free and in no pain. I am prepared to be up all night, but hoping I won't be.

Since Jules stopped needing oxycodone, he hasn't wanted to eat any solid foods. I'm hoping that as he starts to feel better and doesn't need tylenol, etc... that he will be comfortable enough to swallow solid foods and we can begin working on getting him to eat.

Goodnight,
Joy

Celebrating!

Jules has been off Oxycodone for 28 hours!

He is getting by on just the tylenol and doing great!

Eating slightly less than when he felt no pain, but recovering so very well.

We are celebrating with a nice dinner tonight and I am so pleased because Scott is leaving for London on Wednesday and I really hoped Jules would be off the Oxycodone by the time Scott left, so that I didn't have the nights of dosing all on my own.

I wasn't very good at it. Once, I pushed the syringe and missed Julian's mouth by a mile. Instead, my aim directed all the bright red oxycodone to scott's face and hair. It would have been funny if Jules hadn't been in so much pain, but I dont' have the best fine motor skills and so I'm very glad I won't have that job while Scott is away.

And I'm very jealous he is going to London.

Joy

Going longer

Today, Jules went 5/6 hours during the day between oxycodone doses, so I think he's in less pain, which is great. He is pretty exhausted though and taking long naps to recover from the surgery.

going to bed now and hoping for a good night sleep with easy dosing times tonight.

Joy

Good news

Today, Jules weighed in at 21 pounds 1oz at the pediatrician!

This is a weight gain of 1 pounds in the past two weeks, which means he gained back all he lost with the surgery and then some!

He also grew in length to 30 inches.

Although, he is still not on any growth chart.... he does get to finally have a forward facing car seat saying goodbye to the infant rear-facing carseat he has had for SO long!

We also got the news today that he can start at the Boyer Clinic in their classroom preschool twice-a-week for 2hours each time the first week of June and we are THRILLED for him! This will be his first time ever being exposed to other children and we can't wait to see him grow in this way too.

Right now, we just got him to bed and Scott is at Children's getting more Oxycodone for the little guy. Unfortunately, he continues to be in a fair amount of pain and these nights are brutal.

Last night, after aiming the oxycodone syringe into his cheek and then scott chasing it instantly with a bottle, we held our breath praying he wouldn't vomit up the meds and when it seemed like things were fine, I turned to Scott and noticed blood smears all over his white t-shirt. Julian's nose was bleeding again and we knew we had 5 minutes to stop it or he would go to the ER. We were able to get the bleeding to stop and finally got Jules to bed, but I was up, wired, and anxious for many hours into the morning = (

Hoping for a much better night tonight to go with all the good news we had today,
Joy

see, the oxy works

From Charlie Bris + New York + May Pictures

Hanging in there

Jules had a little tiny bit more blood today on his nose, but it was dried and not fresh, so we didn't have to go to the ER.

Tomorrow, he goes to the pediatrician for a check up on his weight to see how much he lost by having the surgery. That way we know what ground we need to make up ahead of use and get a sense of how his body is doing with these big changes.

She will also inspect the wounds in his throat and see how he is doing since the surgery. Given the blood coming from his nose, I'm glad we are going to see her tomorrow.

Unfortunately, last night was a disaster where we were pretty much up the whole night. Scott got a cold, Gigi was up with nightmares on the odd hours Jules wasn't up crying for oxycodone and Scott and I are exhausted. Going to bed EARLY tonight.

Goodnight,
Joy

not ready to get off oxycodone

Jules had some blood in his nose today, which could be okay if that is all that happens, but could be dangerous if we see more bleeding as it could mean the scabs came off the wounds in his throat and that they are re-opening. In that case, he would need surgery again to fix it.

So, we are watching for any signs of bleeding and are prepared to take him to the ER if we see them. So far, he hasn't had any other worrisome signs.

We tried to extend the time between oxycodone dosing and at about 4 3/4 hours he was in massive pain and it was very sad, so we won't be doing that again for awhile.

Joy

Great Job Jules!

Jules ate really well today (well drank all his bottles well) and is at his pre-surgery fluid totals. So happy for him!

He went to Children's to meet with a special dermatologist today about his skin growth near the eye. Lots of pictures and measurements were taken. We will come back in August to see if the skin area has expanded. If it has, we will discuss a biopsy and/or removal with a plastic surgeon.

If it is growing, it will need to be removed in a few months.

I feel bad for Jules because he is on track for three surgeries this year before he turns 2 years old!
The tonsils, the skin growth, and the blocked tear ducts (which is scheduled for this summer).

Hopefully, the tonsils will be the most difficult one, so that the easier ones to recover from are in front of him.

He is still needing the oxycodone to get by, so we are keeping it coming every four hours. We moved the meds
schedule so our nights are now 7PM, 11PM, and 3AM.

We are still pretty exhausted from the time in the hospital and the nights, so we took naps to catch up on sleep today and scott is going to go back to work on Thursday.

Joy

continuing to recover

Jules is doing great!

He drank the same amount today as he was doing before surgery!

Tomorrow, he can start his appetite-stimulant Periactin again and hopefully, start packing on the pounds to recover what he lost during the days of not eating post-surgery.

And soon, we will try weaning him off Oxycodone.

On Tuesday, we are taking him to the dermatologist for a growth near his eye and other than that, we plan to have a pretty tame day at home keeping him stable on his meds and recovering well.

he is on oxygen at night until the next sleep study proves the tonsil removal did the trick taking care of the obstructive apnea.

Goodnight,
Joy

At home

So happy to have Julian home. So happy.

It is so nice to be on the good side of doctor expectations. We can't believe he made it out of the hospital after only two nights. He is such a scrappy little guy.

We are running a mini-hospital here with the waking up every four hours to dose him with oxycodone, etc... and running meds on those 4 hour shifts plus 12 hour shifts for others and oxygen again at night, but our mini-hospital at home is much much more comfortable for all of us than being at Childrens.

We had one vomiting situation that happened tonight, which was traumatic and very painful for Jules. I can't imagine what it would feel like to vomit with an open wound in my throat. But, we finally got the oxycodone in him and he is sleeping now.

Thank you to all for your prayers, good wishes, and positive energy!

Happy Mother's Day,
Joy

On our way to discharge!

they are coming to take out his IV and we are waiting for the pharmacy to get us the pain meds for helping him at home!

Doing really well

Jules is doing so well!

He is off the IV meds and tolerating rectal tylenol and oxycodone.

He ate a little pizza!

He is drinking about 1/3 of what he normally eats, but the resident came by to say we may be going home!!!!!!!

Happy mothers day to me!

Recovering

Jules is doing better.

He ate 3 ounces for me in the early afternoon and then another ounce at 4pm, so that's good. And he is heading for his second dose of the iv motrin.

They want to stop the IV pain meds after that and go to tylenol and oxycodone. We aren't sure he will actually take the oxycodone, but we are going to try and if he spits it out -- we will figure something out.

He took a second nap today, which we hope helps him get better.

His color looks good and he played a bit and took a walk.

We are buckling in for what sounds like it might be a tough night when the IV motrin wears off at midnight and they won't let him have more. We are hoping the rectal tylenol and oral oxycodone can help him enough to keep him sleeping and comfortable until the morning.

I can't begin to say how great it is to be 24 hours past the surgery with no intubation!!! It is awesome!

Joy

Out of the ICU

We made it out of the ICU to the surgical floor.

And we are so delighted to have a private room!

Jules is up on his feet, walking around and the new pain meds thru the
iv are helping him. He took 3 ounces of food for the first time, which is his biggest bottle.

We are so happy to have avoided intubation and so glad to see him smile for the first
time.

We are trying to stay on top of the pain. Our criteria for going home are:
1. Eating/drinking his normal intake of food, which is 5-6 bottles with about 5oz each of food in them.
2. No bleeding
3. No fever
4. Pain controlled

And we have to watch and see his oxygen needs.

Joy

Miserable Night

It was a long miserable night with Jules waking up every hour in pain. He had three morphine treatments to help stop his crying and suffering and give him some comfort. He has refused most bottles, taking a total of 1-2 ounces over the past twelve hours. This makes staying on top of the pain very difficult. He spits out all tylenol and oxycodone.
They can't do tylenol through the iv as it doesn't absorb that way in the body. He can't have motrin or anything else because it increases bleeding which is risky after his surgery.
This morning, our brilliant nurse thought of the idea to give him -- Rectal tylenol!!!!
We tried it and are waiting to see how he does.
Hoping to be sent to the surgical floor and hoping to see him start to eat soon.
Just got permission to get him out of the surgical gown and into more comfortable clothes from home.
Joy

Resting

Jules does not want to eat, so he had to go on iv fluids and his throat swelled so he went back on oxygen. He is sleeping now and they said the next 14 hours will be the toughest. We are watching and waiting and hoping he rests comfortably and isn't suffering or in too much pain.

talking to surgeon

Surgery done.

Went fine.

Waiting to hear how he recovers.

Jules in surgery

jules is in surgery right now.

We are anxiously waiting.

getting ready

Jules woke up in a good mood. We fed him his last food for awhile and he has been playing all morning with no idea of what is happening to him today.

Just 2.5 hours until we leave for the hospital.

Joy

surgery details

Check in is at 11:45am tomorrow.

Jules can't have any food past 5am.

he is going to be a very sad starving little pumpkin tomorrow morning = (

It will be a very long morning leading up to a traumatic afternoon for my little guy.

Joy

Some fun in pictures

As a brief departure from the morose...

Waiting for hamentaschen on Purim

Starting Passover


Ending Passover (Jules is long asleep)

Tulip Festival

May 7 Surgery details

Hi,

there are a lot of reasons why I'm so rattled about this surgery.

First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.

There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.

Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.

Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.

http://babysilver2.blogspot.com/2009/03/update.html

Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.

Joy

May 7th

Got the call that they are moving the surgery up.

New date: May 7th.

I know Jules has been through so much and survived many tough moments in his life, especially
for those first five months in the NICU.... but, I feel scared about this surgery and I'm really shaken up
about it.

More later,
Joy

consensus

Just heard from our pediatrician that she spoke with the ENT surgeon and Julian's Pulmonary doctor and that everyone is in agreement that the surgery needs to happen and that the G-tube surgery should be tabled right now.

They want to see how Jules does after the tonsils come out.

Joy

More updates

Hi,

Surgery is May 24th.

So they measure tonsil obstruction causing APNEA by the AHI index.

AHI Rating
<5 Normal
5-15 Mild
15-30 Moderate
>30 Severe

For children, normal is less than 1.5


Jules measured an AHI of 44
Quite severe for a little kid

Even after they put him on oxygen for the night, the lowest they could get it to was 5.

So, surgery is necessary or his brain will not get enough oxygen.

Unfortunately, they don't typically do this surgery in children as young/small as Jules.
They like to do it when kids are 3-5 years of age.

Right now, we are trying to understand the risks for Jules in his recovery, from the risk of his small
size, to his lung disease, to his young age as it varies from the typical surgical population.

The surgeon told me he had concerns about Jules recovering from the surgery "it will be a dog fight for him to come back from this, will be several days in the hospital when most kids are outpatient." But, the surgeon also said the risk was too high if Jules had APNEA. If APNEA showed up on the sleep study, then the tonsils had to come out.

In the meantime, jules is doing very well on his appetite stimulant. He has gained back the weight he lost when he was hospitalized two weekends ago.

Joy

adenotonsillectomy

The results from the sleep study show that Jules has obstructive sleep apnea. The belief is that his tonsils and adenoids obstruct his airway while sleeping. Among other things, this causes the oxygen content in his blood to vary while sleeping which causes Jules to work harder to breath at night. The next step is an adenotonsillectomy. It's scheduled for 5/25.

Studies show that OSA can also cause poor weight gain.

Sleep Study

Sleep study was awful.

Jules looked like a mummy with over twenty electrodes stuck all over him and then wrapped in gauze.

He had a scary episode where they had to put him back on oxygen all night.

We don't know what this means and are waiting for news.

Joy

Friday thru Sunday

Friday, Jules went for his evaluation at Boyer Clinic:

http://www.boyercc.org/

He qualified to be in their classroom based on his adaptive skills (inability to feed normally) and his social skills (no experience playing with children or much interaction with people other than his medical team).

He did not qualify based on his cognitive function, his fine motor, or his gross motor skills.

We are waiting for a spot to open up in one of their classes and he will go twice-a-week for two hours each time and see his Physical Therapist/Occupational Therapist on site instead of at our house.

Tonight, Jules is sleeping at the all-night sleep study at Children's Hospital with Scott. He has over 20 sensors hooked up to his body and his head wrapped in gauze so that he looks like a Mummy. Scott reports that is is pretty brutal over there with Jules being less than thrilled about the 14 electrodes attached to his head.

Poor Jules = (

Hopefully, they will get six hours of good readings and scott/jules will be able to come home.

Goodnight,
Joy

long days

So,

Jules failed the plane test. He desaturated into the 80s in about 2 minutes, turning ashen and scaring everyone.

So, the only way it is safe for him to fly is if he hooks into the airplane oxygen system.

This makes us all very sad because he is just too old to keep hooked into the plane oxygen with a mask or tube for a flight. He wouldn't be able to walk and or get up and that is impossible for a toddler on a 6 hour flight.

So, Jules will not be going with us to merrie's baby's bris in New York this month = (

Today, we had pulmonary clinic.

Jules lost a pound. He now weighs 18.5 pounds. If he doesn't gain weight in the next month, it is G-tube
surgery for him.

We discussed the situation with his tonsils for a while. Even if he doesn't have episodes of APNEA on sunday night's sleep study, our pulmonary doctor will try to convince the ear nose and throat doctors that the tonsils need to go.

We are giving jules an appetite stimulant to see if he can gain some weight more easily this month. Side effects are either a very hyper or a very sleepy kid.

And we are on a new food plan of making him wait 3 hours in between bottles. No one is excited about that or sure it makes sense. So far, not a good experience. He ate his two 200 bottles this morning, took a nap, and threw it all up. So, really not sure why it makes sense to give him such big volumes when we know he can't keep it down. All of us, heidi, scott, and joy are very discouraged and frustrated.

Joy

ENT

Today, Jules saw the ENT doc.

He wasn't comfortable operating on Jules unless there are documented cases of APNEA on the sleep study we are having this Sunday night at Childrens.

He also said that the recovery would be tough for Jules and that they don't do this surgery on kids this little very often.

I felt like the G tube surgery would be far less invasive after listening to him. The G tube surgery has a one day hospitalization attached to it.

The tonsil removal could be 3/4 days of staying in the hospital for Jules.

I left feeling quite unsettled and unsure of what the right thing to do is for Julian = (

Doing better

Jules woke up this morning feeling almost 100%

He is eating and not vomiting and is running around with his usual personality. It is super great to see.

I got the best call this morning from Childrens that the ENT appointment we have been trying desperately to arrange for Julian has been moved from June 7th to TOMORROW!

So, Jules is having occupational therapy with Keren tomorrow morning, followed by an ENT appointment where we hope to get to the bottom of his tonsil situation. We think his tonsils are impacting his ability to eat.

So far, we know --
1. he has to tilt his head in an odd angle to drink from his bottle and be able to breathe as noted by his Occupational therapists.
2. He breathes exclusively through his mouth.
3. He snores VERY loudly all night long.
4. His tonsils appeared very large on the x-ray swallow study he had at Childrens. Given Julian's issues swallowing and the special thickened formula he drinks, the tonsils are certainly not helping the swallowing situation.
5. The pediatrician noticed he had large tonsils.
6. The pediatric eye surgeon noted that the issues with Julian's tear ducts, his swollen tonsils, and what he suspected may be a nasal obstruction are all interrelated and suggested we see ENT for Jules.

So, the other thing they check for is APNEA, which jules is having an overnight sleep study to check-into on Sunday, 4/18.

Hopefully, the ENT doctor can help us figure out if the tonsils need to go. It would be unusual to remove them in a child so young, but if they are preventing him from being able to eat quickly normal volumes of food and he can't grow -- than perhaps they will consider it.

I will update tomorrow with what happens.

For now, we are so happy to see the little guy feeling so much better.

Joy

Discharged!

Jules did well on IV fluids and Zofran, so he was able to go to pedialyte and then got to go home!

He is doing so much better!

This week he has:
Wed -- Airplane simulator test to see if he desats with cabin pressure changes. Plus appointment with Physical therapy.
Thurs - Pulmonary Clinic to discuss lack of growth, tonsil removal situation and how to get in sooner with ENT, and if a G tube is also going to happen. and a check-in with nutritionist as well as OT with Keren.
Friday - Evaluation at Boyer Children's Clinic to see whether Julian needs more special needs services
Sunday 4/18 -- Overnight sleep study to evaluate tonsil situation more closely

I will post more often on the blog to let you all know how he is doing with all these appointments.

Goodnight,
Joy

Back At Childrens

Hi,

Julian hasn't grown for a few months and we have been in a diagnostic marathon over that lately.

We know we are looking at a G Tube surgery and/or tonsil removal.

Late this week, Jules refused to eat and then began to vomit anything we did get in him. Yesterday, he was starving and everytime he ate a bottle, he threw it up.

He was admitted to Childrens last night after and X-Ray showed a GI situation with fluid in his tummy and he was unable to keep down his thickened pedialyte.

He is on an anti-nausea medication used for cancer patients and an IV drip to keep him hydrated.

His PCO2 was 54. This did not thrill us as he has had a baseline in the 30s/4os for many months.

I will write more when I can. We are all very upset. They won't let Gigi visit. Scott and I got pretty scared yesterday. Being back at Childrens is pretty rough on us = (

You can call us at Childrens: 206) 987-2000 and ask for Julian Silver's room.

Our cellphones also sometimes work, but the reception can be bad.

Joy

Joy

FABULOUS NEWS!

Hi,

Yesterday, Heidi and I took Jules for a Long Long day at Children's hospital.

First, we had an echo. Jules did not enjoy being forced to lie on his side for twenty minutes while the ultrasound tech worked on his chest. But, Heidi and I took turns holding him down while he cried and sometimes he got distracted by a video they had on in the room. Mostly, it sucked though.

Then, jules got a really grouchy and awful lab tech who took blood from his finger and he was very sad.

After these lovely tests, we got to have some fun with Keren and OT. Jules got to practice with a sippy cup and throw yogurt around, so he was pretty happy. He showed off one of his new words -- Challah and had an all around good time, which was much needed at that point.

Then, we went to meet with the nutritionist. Jules had not gained much weight (just made it to 18.7 pounds) so we decided to go up to more significantly fortified food, taking him to 40 calories an ounce. I'm not sure if that is the end of the line of calorie density or whether we can try something else if it doesn't work, so I'm dearly hoping this new concoction does the trick!

Finally, we met with the pulmonologist. He had much good news to give us. here it is:

1. The prelim results of the echo were normal, showing no stress to julian's heart from being off oxygen and his prelim blood work was good as well. But, we have to wait for the radiologist and the rest of the labs to come back to confirm this.

2. Given that, we can do a two night trial without the oxygen concentrator that blows oxygen into his crib, (where we wake up every two hours and test to see if jules has enough oxygen saturation) and if it looks good, we can get rid of the machine.

3. If it looks good, they will bring in another type of equipment to measure him all night long and do a print out or record to a chip, so they can prove he is done with oxygen for good.

4. If all that works, we will start cutting the other diuretics he is on in half and then eliminating them, working toward only having him on the one medicine for his reflux.

5. Given how great Julian looks with his walking, no hospitalizations so far this winter, and coming off oxygen, we got the best news of all -- At the END of April we will break our year-long hibernation and isolation. Jules will get to LEAVE the house!!!

Yay!

I am so happy.

We will be able to leave the house as a family, go to restaurants, go to parties together, have people come visit and gigi can have play dates with friends. It seems to good to be true. I am so excited.

And we can also take him on a flight at the end of April to Scott's sister merrie's baby boy's bris in New York!

When we told Gigi the good news that jules could fly on airplanes now, she said, "Aloha!" and had visions of Hawaii dancing in her head. We had promised her that when the day came he got off oxygen, we would all go to Hawaii, so I am going to plan that trip too! I am so very happy.

We do have to take Jules to a special flight simulator test to make sure he can handle changes in cabin pressure. If he can't they will give him special oxygen just for the duration of the flight.

And we will have to find a hotel near merrie's place in new york that will give us a big fridge to hold all his weird liquid food stuffs. But, that is it and we can go!

Finally, because of this, Jules will get to meet other children his age for the first time at a twice a week preschool at his special Boyer Clinic where his physical therapist works. He will start preschool that goes for two hours 2x a week at the end of April.

I am so excited for him! And for us!

Joy

preemie follow-up

So,
wednesday was julian's one year evaluation at the CHDD
http://depts.washington.edu/chdd/ucedd/ctu_5/hrifclinic_5.html

He made everyone's day by walking into the appointment with the developmental psychologist!
Yay! Yay! Yay!

He scored for his adjusted age exactly on target for motor skills as a 12 month old 8 pounder at full term would have scored at one year and as an 11 1/2 month old intellectually.

The developmental pediatricians told us that they almost never see micro premies walking before 13 months and have never seen a micro preemie as sick as jules ever walk before 13/14 months. A few doctors came to feel his muscle tone because they were so surprised at how strong he was. They told me they usually see kids on oxygen for 2 - 3 months who have very poor tone and problems and they don't have the opportunity to see babies on oxygen for more than a year very often and they were surprised to see how healthy he was given those circumstances.

They wrote that he is on "signigicantly fortified feeds" due to growth lag or whatever and I realized that on the part of the form where they typically list all of julian's issues that for now, that was the only one in the box -- tackling growth. It is a big one and I am going to focus on that being the center of my discussion on 1/19 when jules has his next pulmonary clinic day. And they cautioned me to be on the lookout for some of the common pitfalls concerning preemies, like attention problems, etc...

I was sick to my stomach walking the long tunnel into UW and quite anxious about these appointments and can't begin to express my RELIEF that they are over. We don't have to go back till he is 2!

Our NICU physical therapist called me personally last night to tell me she went to read the reports from the team and to chat with them about jules and she wanted to tell me how extraordinary our outcome is and how delighted they were with him.



Yay!

update

Hi,

Today, we went to the pediatrician and Jules had gained 13 grams a day bringing him up to 18.7 pounds! So, we are going to continue on the 35 calories per ounce and hope for some big growth by the jan. 19th pulmonary clinic meetings.

His lungs sounded good off oxygen.

Dr. was happy to see his cold was on the way out and that he had gained weight.

We are going to do an echo-cardiogram 1/19th as well as labs, etc... to make sure his heart is not strained by doing so much work to push oxygen around his blood and we are hoping we will get the all clear to be off oxygen.

tomorrow, is julian's one year BIG developmental assessment.

Joy

not growing still

So, we are going up to 35 calories per ounce. This means when we make a batch of food it is:

Recipe for Julian's food:

Six 80z cans pediasure
6 tablespoons Duocal
120ccs simply thick
50ccs pear juice

I hope this works!

We have been off oxygen via nasal cannula for days and nights and so far so good. he still has his bedside oxygen concentrator.

On Jan 6th, he is going for his one year evaluation at the high risk infant follow up clinic. He will spend an hour with a psychologist, an hour with a developmental pediatrician, and an hour with audiology.

Happy New Year!
Joy