Eye doctor

Elliot went back to the eye doctor again last week. Everything looked great. His pressures were 13 in both eyes. He's such a trooper too. The girls there are shocked at how well he handles getting his pressure checked. The doc. said that they even have to put children to sleep sometimes to check their pressure. Elliot just lays there.

His next laser treatment is scheduled for Jan. 6th. We postponed due to Christmas. Will update again next month.
 

13 days post op

The dots are taking a little longer to clear up this time. They increased the joules so I'm sure that's why. He was looking a little disheveled here. Haha.

9 days post op

8 days Post op

Elliot 8 days post op. looking good :)

Laser Treatment #3

Elliot went back to U of M on Friday (Oct. 7, 2011) for treatment #3. We decided to give him a dose of Versed this time as he is clingy lately. This was definitely a great choice. No tears this time. He was happy go lucky even in recovery. We saw a different doctor this time, the one we had our first consultation with. Same office but different dermatologist. I think he did an amazing job, he got the "spots" much closer than they have before. We again decided to skip the eyelid to minimize swelling. Now onto the pictures.

Arriving at hospital for tx 3

 

 

Getting back into the car. :)

Friday night, more swelling

Saturday Morning (Day 1 pots op) More swelling from sleeping

Sunday (2 days post op) Swelling almost gone. Yay!

Tuesday (4 days post op) Some areas are lightening already

Wednesday (5 days post op) The spots on the side are much lighter.

I'll post more pics of the healing process. I hope we see a great improvement after this treatment, I'm very optimistic about it. :) Thanks for following along!

One more week

Just a quick update. Elliot's next laser treatment is next Friday. That will be treatment #3. I'm so anxious about it I can't stand it. It's bothering me because he's older this time, and I don't want him to be afraid. I know he won't want to go with the anesthesiologist but I'm not allowed to go back. I just pray that he isn't scared. If he doesn't react well then we will have to do the "amnesia cocktail" next time, something I don't want to have to do. Hopefully all goes well and he doesn't swell to badly.

Also, he went to the eye doctor last week. His pressures were in the normal range but just barely. We go back in three months for a recheck. Hopefully it's lower next time.

I'll be back next weekend!

Moving slowly

I didn't do a great job updating after the last treatment. Elliot responded great to it once again though, very pleased with the results so far. You can see every spot that the laser hit, it's like a web on his face now.

He had another eye exam last month and got great news again. There is always a sigh of relief with good news. =)

I called a few weeks ago to set up his next laser treatment and was informed that the next available date is not until October. This is going to put us three treatments behind for the year since he missed one due to RSV. I'm very unhappy about it but unfortunately there isn't anything I can do. We were put on the call list for any cancellations but I was told that list was already quite extensive. I'd really like the first round of treatments to be complete by the time he starts school. Also, the older he is the harder it is going to be on everything. I just pray they can get us at least one appointment before October. I booked one for December at the same time since it seems like they're filling up fast now.

I considered taking him elsewhere but for now I don't feel comfortable doing that. The U of M has saw him since he was born and I feel comfortable with them. It's a great hospital with an amazing staff of doctors.

On a more personal note, Elliot is getting so big so fast. He turns 1 next month. He's been taking a few steps here and there but still prefers to crawl. He definitely has a personality already and is starting to throw fits when he doesn't get his way. Hope he grows out of that one soon!

Thanks for reading and following along with us on our journey.
xoxo

Healing Pics tx #2

 Sorry I haven't been posting daily. It's been a rough week. My grandma is in the hospital with blood clots in her lungs, my husband has had a killer toothache, and yesterday was my birthday.

Elliot is healing up very nicely once again. Here are some pics from the last week. (starting with earlier and ending with today.)

Today he has a huge pimple on his right cheek. Poor little guy is just spotted all over! Such a happy lil guy though. <3

Day 2 

Practically no swelling. Dots are darker. He's still happy go lucky :)

Laser #2 Recap

Elliots treatment went well. I chose to not laser the top eyelid for less swelling this time. He's handling it like a little trooper. I was afraid with his crawling that the swelling would really bother him but he hasn't seemed to notice. The swelling reduces quite a bit throughout the day. The dots are becoming darker and probably will for the next day or so.

The dermatologist said the results from his first treatment were great, even better than average. She still claims we're looking at 6-12 tx total. I pray that's all it takes (besides maintenance tx).

It's funny because he wakes up way before he should once he's in recovery. He's such a mommy's boy (and I'm sure he wants to eat too, haha.) I told the nurse absolutely no formula this time. He woke up crying in recovery so they allowed me to go in and he was back out immediately after latching on. =) He's my world.

I'll continue posting updates and pics through the healing. Feel free to leave comments or questions if you'd like. Thanks!

Day of and Day after

  Before leaving the U of M

Saturday morning. Still pretty swollen from the night. Swelling went down quite a bit throughout the day.

Eye doctor appointment & Teething

Elliot has to be checked every 2 months for glaucoma due to the PWS. We had his eye appointment Tuesday and his pressure checked out perfectly! His pressure was 12 in both eyes which is perfect. It's such a relief whenever we get these results. :)

He has been teething really bad. He has his bottom two teeth busting in and his other top tooth. The bottom actually poked through in the night. He was screaming so bad yesterday with a 100* fever that I took him to the ER. Nothing else was wrong though thank goodness. Last night his fever reached 101.5. I put a call into the nurse at the Ped's and Dr. Dy wants me to just watch him for today and bring him in tomorrow if he still has a fever.

My moms wedding reception is Saturday so I'm praying that he's all good by then. =)

Postponed

Elliot was still sick the day he was suppose to have treatment so we had to reschedule. The soonest we could get in is May 13th.

He's feeling much better now, no fever since Friday. Hoping this last illness was the last for a while!

Next Treatment

Elliot is scheduled for his next laser treatment next Friday. We've all got a cold right now so hopefully he isn't congested next week or we'll have to reschedule. He has light polka dots from where the laser touched last treatment, I feel like it worked well.




More updates next week!

10 days post-op

Elliot trying out a banana at 10 days post-op. Just a few spots left. :) Will update again tomorrow!

Register

Day 8 post treatment

Spots are looking much lighter, and many have faded almost completely. And Elliot's cold is getting better...yay!

**BTW, Elliot is not always in his carseat. I just find it's the easiest to get a decent picture when he can't squirm all over. Hahah!**

One week post-op

Today marks one week post laser treatment. Two of the dark spots have started to scab, I'm praying that they don't scar. The rest is looking great, but it's really hard to tell if any of the stain is gone because it's still healing. Here's a pic from today...he was trying to feed himself. :)

Picture updates :)

This week has been a long week due to a chest cold running through our house. Here are some pics of the last few days. The spots are getting noticeably lighter. =)

Monday-3 days post-op

Tuesday-4 days post op

Thursday- 6 days post op.

The only discomfort Elliot has felt through this was the first 2 days of swelling, and barely even then. Everything is below the surface so you can't feel anything when you touch it. I kiss his cheek 100x each day like always and never even a flinch. Now if this cold would just go away!

2 Days Post Treatment

Elliots swelling has went down about 50% since Friday. He's finally able to see out of his left eye again. Sadly though he has gotten sick on top of all of this. He's been running a fever, has a congested cough, lots of spitting up, and a hoarse cry. I feel awful for him. Even being sick though he's 100% happy go lucky. I really am the luckiest mom in the world. <3

 

Sorry it's a horrible cell phone pic, had to blow it up some. Will try to get a better one later with the Nikon.

Pictures of the "aftermath"

Now for the pictures as promised. It looks awful! You've been warned! However, he is still cute even through all of that craziness! =) I plan on taking a photo each day through this. They say it will look worse before it looks better, and it is much worse today than it was yesterday.

Waiting to be taken back.

Chillen' with Dad before being taken down!

Leaving the U of M

Today, much more swollen.

I have another on my phone I'm going to try to upload.

Cannot wait for the swelling to go down. His new nickname is Bruiser! haha.

First Laser Treatment

Yesterday was Elliot's first laser treatment at the University of Michigan. All of the doctors and nurses were so nice and informative. We started out in Pre-op where they took his vitals and got him in a gown. The doctor and anesthesiologist cam in to talk to us about the procedure beforehand. The only question I had was "how many kids have you put to sleep that haven't woke up." I was relieved to hear the answer was ZERO. That's when I decided that we were finally going through with this. At 2 pm  Emily, the anesthesiologist, took Elliot down to the operating room while Rob and I were moved out to a waiting area. Within 15 minutes the doctor was out to tell me that everything went well and they would be paging us in about 20-30 minutes. About 5 minutes later we were heading down to the recovery room. Elliot had woke up and wanted to nurse. As I'm walking into recovery I thought it was odd that I couldn't hear my baby screaming as he was suppose to be very hungry. The nurse walks me into his room where another nurse was holding Elliot and feeding him a bottle of Similac. After I picked my jaw up off the floor (this was his first formula, he's 100% breastfed) I bit my tongue to play nice. I did find it very rude that they would feed my baby formula without my knowledge. I didn't have it in me to argue though, and he seemed content. :)

At first the swelling was mild, as were the polka dots on his face. I nursed him and snuggled until we were released. By the time we made it home his eye was swollen shut and the dots were taking on more of a purple/black color. Thankfully I had prepared myself for this in the prior weeks thanks to Google. I wasn't fully prepared for the amount of swelling, but I'll deal.

Today Elliot seems pretty happy, basically his normal self. He's smiley and getting used to only seeing out of one eye. I hope the swelling goes down quickly!

I will post pics later of after the procedure. Thanks for following!

Our handsome little man

The Beginning of our Journey

On Aug. 16, 2010 I laid in a hospital bed giving birth to baby #3. We didn't find out the gender so I was anxious to see if we were welcoming a new prince or princess into our family. After hours of labor, the doctor handed me my new little Prince Elliot. I pushed hard to get him out, and he was all shades of red. They weighed him and did the Apgar and he was perfect. He weighed 8 lbs 10 oz and was 20 1/4 inches long. He was a bundle of joy. I don't have easy labors, and my body starts to go into shock shortly after birth. I get wrapped up in my own health for a minute and everything else begins to fade. However, I'll never forget my mom in the background asking the nurse what was on his face. The nurse wasn't sure herself, she said either bruising or a "mark." I never noticed anything when I was holding him except how perfect he was. I remember my mom coming over with the baby and telling me that the nurse said it might be a "mark" but it may just be bruising. He was so red I still wasn't 100% sure what they were talking about. I nursed him and snuggled for hours. As the time went on, the redness from delivery started to fade...well everywhere except for the left side of his face. My mom kept assuring me that it was probably just bruising due to the rough delivery we just had and I blew it off again. By that evening it was clear that it wasn't just bruising. It had a prominent outline and a "horseshoe" shape above his eyebrow.

That evening the pediatric nurse came in and took Elliot down for his check up. When she brought him back she confirmed that the "mark" on his face was a Port Wine Stain (which we later found out is hereditary and my mom has one on her side). I was in shock. I had a million questions and no answers. So I pulled out my laptop and started researching this. That was the worst thing I could have done. While it gave me insight to my sons diagnosis, it also instilled a fear that no new mother should have to endure. Apparently Port Wine Stains on the face can be a sign of Sturge-Weber syndrome. SWS is an epileptic disease that can cause siezures, retardation, glaucoma and many other things. On top of that, a PWS left untreated can grow in density causing a host of problems itself. They don't stay flat, they thicken and grow nodules and become a deep purple. I remember sitting on that hospital bed holding my baby boy crying, knowing that I was in for a long road. At the time I didn't think I was strong enough to deal with it. I've found that I'm a lot stronger than I could have ever imagined.

Tomorrow we start Elliot's first laser treatment. They think it will take 6-12 treatments, given every 6-8 weeks. I've been a ball of nerves, mostly because they have to use a general anesthesia in order to do it. So far his glaucoma tests have been good, thank God.