Ty's Visit to CCH

On Tuesday we took the family to CCH for an appointment for Tyler. This one was with the Hemangioma unit. We had not been there for a year. Ty's PWS is very faint and hasn't really changed in the last couple of years. It was darker and more noticeable when he was a newborn. The best news is the doctor's feel it is of so LITTLE concern that they don't need to see us for two years! Praise God! They chatted with me about his developments, observed him in the room, asked questions etc. They asked me how we feel about his PWS and I said we have NO concern right now! We are just so thankful that what we thought it could have turned out to be (Sturge Webber Syndrome) hasn't been a concern at all. It is so faint I would say 95% of people never notice it. So it doesn't even really cross our minds anymore. An appointment for CCH comes up and we're like "oh, yeah- that".

We are on yearly visits to neurology. We are still on 6month visits to ophthalmology. That is the biggest threat due to the placement of the blood vessels near the eye and the possibility of developing glaucoma. But God is good and our little Tyler is doing just fine!

Two Tyler funnies:
The boys have a kids coconut scented shampoo. Ty does not like the coconut shampoo. In the bath he says "I no want polka-dot shampoo." It is ADORABLE!!!

Ty sometimes pretends to be a cowboy. This week he has run through the house saying "Giddy howboy". Again sooo funny! Instead of Giddy-up Cowboy it's just Giddy Howboy! I love hearing him talk. :)

Ty Update

Andy took Tyler to CCH on Tuesday. He went for an ophthalmology appointment. He had to get his eyes dilated and miss a nap but daddy said the french fries for lunch made up for that! No glaucoma or any other complications at this time! We still return every 6 months to ophthalmology. His port wine stain is still very faint and unchanged since any previous updates. He went to the Hemangioma unit in August and they are now seeing him only once a year! Our next CCH appointment is for Neurology in December. These have still been every 6 months while he is still in such a critical developmental age. I'm guessing these will begin to be spaced out as well. I'm sure everything will be fine - he continues to meet all developmental milestones and is very advanced with his talking as compared to our other two boys at this age! Praise the Lord for the continued good news regarding his PWS. God is good!

My Ty

Thankful for the good news we heard from Cincy Children's. They had me concerned yesterday. Tyler's bottom lip turns blue sometimes and his lips quiver, like he is really cold. It happens randomly and not connected to being outside. Sometimes after lunch or after a bath. I just assumed he was cold. Andy was afraid it could be related to his port wine stain - the extra blood flow by his face etc. So I called CCH. Talked to the hemangioma unit and the nurse there was concerned. She was glad I called and wanted me to follow up with the neurology unit to see what they thought. Then she asked me to call her back and let her know. So I spoke with neurology and after 3-4 phone calls this morning we are concluding that he is OK! He is responsive when his lip is blue, he is acting normally, we think that he is JUST cold. This might sound dumb to you but when you go to all of the appts at CCH and they tell you all the signs to watch for regarding a seizure plus read about all of the complications a PWS can cause you understand my concern. Yesterday they were talking MRI, today after consulting with the neurologist we're ok. Her explanation for why it might happen after eating made sense. He is just cold. I can keep warming him up with a blanket. Thank you, Lord.

T-Dub

Yesterday we made the trek to CCH for a neurology appt. It was LONG. But uneventful! Yea! Tyler is developing as expected with no complications from his PWS. That is the news we want every time. We got there around 10am. Went to the dr room around 11am. Saw the doctor at 12:20pm. It took forever. FOREVER. Tyler was tired and hungry. There is only so much one can do to entertain in a tiny room for that long. Luke was with us too and he was such a trooper. I did venture out to find a snack machine and bought the boys some animal crackers eventually. The neurologist did spend about 20min with us asking questions and assessing etc. Ty also got his first round of H1N1 vaccine b/c they had it available and offered it to us. So at 1pm we were able to leave. Rushed out of there, drive thru at Wendy's, ate in the car, and made it back just in time to pick Wilson up from school! Best news: neurology doesn't want to see Ty for 1 year!

Tyler has also been cutting TWO teeth - one of the back molars and a tooth on the bottom left. Poor baby!

I am well and need to go get ready for work! I am so thankful to be healthy and able to go to work today. Plus, only 4 more days!!!

9 Months!!

Tyler is now 9 months old! He is sitting up really well and starting to try to get up on his knees. Not rocking on the knees or crawling yet! He has 2 teeth and is trying to cut more right now. His gums are really hurting him. He still loves to eat and is eating more finger foods. He likes yogurt, cheerios, puffs, bread and even tried little bites of chicken nugget today. He is finally sleeping through the night again. His neurology appointment at CCH went well. He is developing as he should and there are no concerns at this point with his port wine affecting his brain! We go back to the neurologist in 6 months for another check. He is one happy, sweet boy!

My 8 month old!

Tyler is 8 months old today! He is doing great! He loves to eat- I haven't found a baby fruit or veggie that he doesn't like. He is eating stage 2 foods. He likes rice and oatmeal cereal. Tonight he ate 2 things of food for dinner! He is a piggie. Not that you can't tell that from all of his rolls already :) . He is sitting up well and loves to play with toys. He thinks is big brothers are totally awesome and loves to watch what they are doing. He laughs a lot and is the sweetest thing ever. At his appointment today at CCH for his glaucoma check-up we got all good news! No changes to his eye. Andy ventured to CCH on his own with Ty because I couldn't take a day without pay. Holly came over to keep Wilson and Luke (who had a GREAT day!). Apparently opthamology and dermatology are having a difference of opinion. Last time at CCH we were told glaucoma testing every 3-4 months. Today Dr. Y said he really doesn't think he needs to see him more than twice a year, every 6 months. So we'll just keep going to CCH for those. When I thought we'd be testing every 3-4 months I wanted to do it here. But now we're just going to keep them at CCH. Upcoming appointments:
June- neurology
August- Hemangioma/Vascular Unit (birth mark)
November- opthamology
Tyler is perfect and such a sweet and happy baby boy! We love you Tyler Wade!

Wow. What a week!

Life has been way too busy lately. I don't even know where to begin! The whirlwind of working full time, having 3 children, and trying to get our house ready to list is pushing me over the edge. Andy and I are both exhausted (me from the list above and still nursing in the night and Andy from staying up too late working on the house). I feel like I'm never going to be well rested EVER again. I know it will pass but when you're going on 6months+ it sure feels that way! This week I had meetings after school, the boys went to the dentist, and we worked on the house. Today I had my haircut, gave free makeovers at church for the mom's retreat, and then went to a fun baby shower for Kylie! It was so good to see her and Joe!

The boys are doing well. Last night we were getting out of the van. Wilson saw an older couple walk up next to us to get into their car. The man dropped a key. Wilson said "Sir, you dropped something." He made me SO proud! He was so polite! As we walked away I told him how proud that made me that he was so polite and had such nice manners! Good to know it's in him! :) Lately when I come home from work Luke sees me and tell me he is ready for his "nack" (snack). He says "Hey mom, I want my nack." It is so cute. After talking to my teacher friends about this I realize he only doesn't say s's when it is sn...! Tyler is doing well. He is 6 months old now! Hard to believe. So it is time to do the rice cereal for real now. Twice a day will be our goal. He is precious. I had a rough night on Tuesday in regards to his PWS. It just got to me. The longevity of dealing with it and always checking for complications caused by the PWS. I love him just the way he is but after talking to my mom, I know that I will have hard days as I learn to process what all of the doctor visits are telling us.

So, in a nutshell: School is fine. I am sleep deprived. We're putting our house on the market. Wilson, Luke, and Ty are the best little boys a mama could ever wish for! Tyler is happy and healthy. I love my husband! I've not gotten to watch tv in so long I don't even remember which episode of my two shows (DH, GA) I've missed. I need to clean my house. I need to tag all of the clothes for the consignment sale. I need sleep.

20 Pounds, 12 Ounces!

Can you believe Ty weighs 20lbs, 12 oz at 5 1/2 months?!?! Time to switch carseats...he can't even sit up on his own yet! Ty went back to CCH today for his two month checkup on the PWS. Andy picked me up from school at 1:15 and we arrived back at my mom's to get the boys and 7:30pm. It was a long day. We had 1 scheduled appointment in the Vascular Malformation center and ended up having a dermatology consult as well. Similar news as before though this time I had a few more questions. I found out that laser treatment for PWS has only been around for about 12 years so there isn't data to show how well the treatment works in the long term. IF Ty's PWS changes (darkens) and we decide to do laser it will require anesthesia and will feel like snaps from a rubberband and will also feel like a sunburn. Dr. E said they want PWS's to lighten to look like Ty's looks now with the laser so there is no point to doing it right now. I was able to discuss and keep up with what he was saying from reading on the nova website. He wanted a second opinion from the dermatologist. He does want us to keep our Neurology appointment.

When the dermatologist came in she talked to us more about Sturge Webber syndrome with the location of his PWS. She said even though the PWS isn't causing SWS right now, it could in the future. It is something we will have to watch for. She feels strongly that Ty should be tested for glaucoma 3-4 times a year due to the PWS being around his eye and on the eyelid. She also noticed that the cheek with the PWS is slightly fuller than the other cheek. First time this had been brought to my attention.

So, good news overall. Next steps: watch for normal development and attend next 3 scheduled appointments.
May- Eye appt at CCH
June- Neurology appt at CCH
August- Vascular Malformation appt at CCH

We're hoping the glaucoma tests can be done here after the next one we have at CCH in May to cut out some of the trips there. We are so thankful for Ty and blessed to have another wonderful little boy to love on. He gets so many compliments everywhere he goes about how cute he is! He is such a good baby too. We love you Tyler Wade!

5 months

Napping in Mommy and Daddy's bed. He tucked his arms up under the pillow!

Trying to eat his lion!

Ty turned 5 months old this past week. He is such a big boy! He trys to sit up and is now arching his back when we put him in the carseat. He loves his toys and watching his big brothers! He also still loves to eat and be held. He generally naps in mommy and daddy's bad where we can turn the fan on for background noise. He sleeps in his crib at night. Still eats at night 1 time around 3 am. He tries to fight his morning nap sometimes as he did at church today! He is such an easy baby and so sweet! I still hate leaving him every morning. He's perfect! His birthmark (pws) hasn't changed any. We go back to CCH in March. He's in such a roly poly boy! His legs are so chunky. I love him so!

My little Ty

Ok. So I'm still very thankful that Ty's birthmark isn't causing serious complications. But over the last couple days the whole Port wine stain is really bothering me. To me it is noticeable and I just have this fear that as he gets older if it stays the way it is now then he'll be made fun of or teased. He is so precious and sweet and so handsome. But kids are mean. If he has a bright pink side to his face he will be made fun of. I don't think I'll handle that well. I don't want him to be self conscious or think that he is unattractive. Maybe my worry is for nothing and it will fade. But I can't stop thinking that as he gets older what life will be like for him. What will go through his mind? Kids are self conscious enough without having something that noticeable. I know many of you will say it's not dark. But at home there are days that Andy and I say to each other "it's dark today" or when he is crying/eating/working hard and it darkens it is really noticeable. I think he is perfect and precious but I just want him to be confident in who he is and not avoided or made fun of because kids think he is "different". How do you handle something like this and not just think about it and worry about it? I'm ok, I just want to know that he's going to be ok and be able to handle whatever comes his way. Will it be every time that I tell him he is cute/handsome etc in his mind he's thinking he's not just because of his birthmark? Am I being ridiculous? My anxiety is pretty evident in this post. But I needed to get it off my chest. Sorry for the randomness of my thoughts!

Ty's Appointment at CCH

Today was a long day. But we left with good news! Praise the Lord! The opthamalogy visit was from 12:45-2:30 and all went well. No glaucoma or any other eye problems so the opthamalogist didn't think the port wine stain was causing sturge weber syndrome. They dilated his eyes and checked the pressure and did several other things. Ty was a trooper! Then we went over to the Hemangioma and Vascular Malformation Unit. Our appointment was at 3 but it was at least 4 pm before we were called back. We saw 4 doctors at one time. They were so nice and also agreed that this wasn't Sturge Weber Syndrome. It is officially a port wine stain (type of birthmark). They want to watch it to see if it darkens. If it does we'll start talking about laser treatment to lighten it. As of now we don't need to do anything but return in March. They were so nice at CCH. I was very impressed. The doctors were willing to talk to us and didn't see to be in a rush. That place is HUGE! It felt like we were in an airport or something- having to read all the signs to get to the right building etc. After thinking that Ty could have SWS, I'm so thankful that it is just a port wine stain. We can deal with that. God is good!
Oh, and by the way Tyler weighed 18 lbs, 11oz. And has his first ear infection. So one of the dr's gave him his first prescription.

Ty's birthmark update

We heard from Cincinnati Children's yesterday. The first step is to fill out the paperwork and fax it in. Once they receive the paperwork and review it they then schedule the appointment. So I was on the Hemangioma and Vascular Malformation Center's website quite a bit last night. Very informative. Looks like they'll know a lot and really be able to help us. We are so fortunate to live near such a big hospital. It was a little upsetting to read much of the info on there but I want to be informed so that I understand what they are telling me when we go. PLUS I keep telling myself every day I cannot worry until I know there is something to worry about. But let's be real. I am worried. But I'm controlling the worry with that statement above so that I can keep living in the moment. I have 3 boys and a wonderful husband that need me! Anway, the packet is very detailed. We're talking 13 pages. I'm almost done filling it out so I can fax it on Monday. The only things left to do are measure the birthmark, attach a picture of the affected area, and measure the affected area so they know the size. The rest of the packet is medical history, personal info, referring doctor info, etc. Thank you for praying for this situation. I'll let you know when his appointment is scheduled. I hope it isn't too far away because I'm ready to hear their opinions.

Ty's birthmark.

Most of you know that when Tyler was born the right side of his face was noticeably (at least noticeable to me!) pinker. The pinkness has not gone away and the pediatrician referred us to the dermatologist. I took Ty this morning for his appointment and did not get the news I was hoping to hear. The doc came in and looked at it and said she wanted her colleague's opinions. So then 4 more doctors came in and looked. They agreed that it is a port wine stain. It is really light right now and gets darker when he cries or gets mad. Apparently these birthmarks start light in color and can get darker as the child grows up. The concern with the birthmark is that it is partially on the scalp and eye. This can result in Sturge-Weber Syndrome. That's not good news so please pray that the capillaries causing the birthmark are not on his brain or eye. I am trying to trust that things will be okay. The next step is to go to Cincinatti Children's Hospital - the Vascular unit and find out more about his birthmark. They'll look at his eye and possibly do an MRI to see if the capillaries have the potential to cause problems. I called Cara and talked to her because she always has a logical perspective. Sometimes I get too caught up in the what if's and so we talked about it and she looked up the Sturge Weber Syndrome and read me the details. I'm not going to let myself think about the possibilities of what the syndrome can bring- because I have to wait and see what the doctors say. Otherwise I would make myself sick with worry. Tyler is happy and healthy and will make it through whatever we find out, and like Cara said, God won't give us anything we can't handle.