GI Doctor

Ronan's teacher came over today for his bi-monthly visit. While she was over I received a phone call from his GI doctor asking me if we could make it to Ronan's appointment a half an hour early because they were closing due to weather. I said I would try but that Ronan was in the middle of a teaching session. Ronan wasn't being too cooperative today and just wanted to snuggle with his teacher rather than work on play skills. His teacher left me a binder full of new signs to learn.

We made it to the GI appointment a half an hour early as they had requested. Ronan's GI doctor is concerned about how his swallow study showed his food was getting stuck. He wanted to schedule an endoscopy for first thing tomorrow morning but we're supposed to be getting a blizzard and he didn't want chance it. He scheduled the endoscopy for first thing Thursday which is when things should be clear again. Until then I'm to only feed Ronan pureed foods.
Ronan's GI doctor was also concerned about the high dose of Prevacid he's been on he said it was double the limit for someone Ronan's age. He wants me to cut Ronan's dose in half immediately. When the doctor goes in to do the scope on Thursday if he finds that Ronan's esophagus has begun to collapse then he'll fix the problem right then.

I had speech class tonight. I gave my first speech last week and was unsure of how I did. I got my results back tonight and I had 20 out of 20 points. My instructor put all positive comments on my paper. I was relieved because I thought I had done a lot worse because I had been pretty nervous.
Tomorrow is going to be a busy day for me. Ronan has an eye appointment. Ronan's eye doctor thinks Ronan's reoccurring eye bruising might be a damaged vessel from his surgery. After the eye appointment we have a couple therapy visits and then another doctor's appointment. It is unclear as to whether this pending storm will impede any of these planned appointments.

Staying in Green

The big kids were happy today because they all stayed in green at church. This is usually the case but once in awhile one of them might enter the dreaded yellow zone as a warning. Those days usually bring tears and fear of facing daddy. They have thankfully never been in the red. At red you have to go sit with your parents and miss the rest of church club.
I noticed while getting Jadzia ready for church today that her shoes were getting next to impossible to get on. I knew it was time to get new shoes. Her feet have been growing rapidly over the last year. This time last year she was around a size six and now she's up to a nine. The boys' shoes were still fitting great and I figured we'd take them shoe shopping in a month or so.
We made it to the shoe store at the mall with the intent to buy her her favorite kind of shoe, Twinkle toes. The store at the mall has good discounts on them. We ran into the problem that they had every other size but the one she needed. The lady checked to see if they had them at another store. She found out for some reason their stores don't carry size 9.We made our way over to Payless and they were having Bogo! Jadzia fell in love with a pair of shoes that are identical to a pair she had about a year back. They are disney princess pink sparkle shoes. With the Bogo going on I got her another pair of butterfly sneakers for only $3. While she was waiting for the shoes to be bought she stood in front of the glass window waving at everyone who passed by. She has the princess wave down. She was excited when I let her wear her princess shoes out of the store.
Isaac spent a good portion of his day attempting to get complete strangers to let him take their photo. All the pictures had to be outside and it was 20 degrees out. He shivered his way through about two and half hours at one of the local malls. He had a hard time getting people to agree. Now he's just hoping they turned out. He was required to use his film camera and this was the first time he ever used it. Since there is no play back screen he has no idea if they ended up being ok. He'll find out tomorrow when he himself develops them.See the paper Xander is sticking into the camera that is his paper sword. The child has four totes full of toys and he was occupied today completely by a pretend sword he made out of typing paper and scotch tape. The boy's resourcefulness is amazing.

We goeth Blond

Jadzia wanted to play little red riding hood again. Xander said he would play only if he could be the big bad gorilla instead of the big bad wolf. Jadzia seemed ok with this. They talked my mom (their babysitter for the day) into playing none other than the grandma part. Landon missed out on the fun and opted out to play hot wheels.Isaac and I left in the morning to meet my in-laws. Today is my father in-law's birthday. We had a good time eating brunch and enjoying each other's company. We had a nice walk around the mall and finished off with a movie. I was worried Inara would be screaming at my mom all day and refusing a bottle but she did awesome.

Isaac and I both dyed our hair. I have been trying to dye my hair blond since right after Ronan was born. I was a blond for the first 12 years of my life so why not go back for awhile. My hair was too dark and my hair kept turning red instead of blond. I found a pack that said it would turn the darkest hair blond. Isaac dyed my hair for me. In two months we're going to touch it up again. Isaac decided he wanted to go back to his old hair ways so he dyed his hair as well.
I'm still getting used to the look on both him and myself but I'm starting to really like the change. I needed a change. I'll have to post a picture with my hair down some time so you can see the new cut I got as well.

Chew Tubes

The therapist who gave Ronan his swallow study thought part of the problem with his food getting stuck may be that Ronan has weak jaw muscles. The weak jaw muscles make it harder for him to chew. The speech therapist asked me to call Ronan's regular OT and talk to her about getting him Chew tubes. I had no idea what chew tubes were but I called Ronan's OT as soon as we got home yesterday. She had been out of the office but she called me back first thing this morning. She agreed that Ronan had very weak mouth muscles and she had some chew tubes that she would bring over in the early afternoon.When she arrived she had three different types that she gave us. The chew tubes are a rubbery plastic. His only job is to chew on those as much as he wants. The type of material they are will help build his mouth muscles every time he bites. His therapist is awesome to bring them right over to us.Inara had an accomplishment today. She learned to hit two blocks together. On top of that she also got to get out with mommy and daddy and go to the mall. She has not been to the mall since she was two months old. What can I say I rarely get to the mall unless it's on a date with Isaac. Isaac took me to get my hair done . Inara had her red hat with the green flower and she attracted attention everywhere we went. The only problem was people would come over to see her and in high pitched baby voices they would greet her. In turn Inara would repay their greetings with screams and tears. Inara has stranger anxiety.
My normally happy, carefree baby was turned into a terrified mess who clung to me with everything in her. This proved quite problematic when I was getting my hair done. Daddy's attention wouldn't suffice and she would sob and bury her head into daddy's shoulder. She would seem to drift to sleep then she would turn and notice my three reflections in the salon mirrors and the tears would once again flow extensively.

When my hair was done I held her and she laughed almost giddy with joy to have familiar, safe mommy once again. Not only does Inara have stranger anxiety but she also has extreme mommy attachment.
My family came over for the evening. We had dinner and a Valentine cookie cake for dessert. Xander was my server. The boys played dinosaurs. I was excited to win an Ebay auction for Ronan's drink thickner. Imagine if the only liquid you could every drink was thickened with a sort of broken down oatmeal with a gritty texture. You could never have any type of smooth liquid to wash your food down with. This is what Ronan has been living with since he was born.
I could never thicken juice or water because with the rice cereal juice would not thicken properly. This left his only beverage choice as a gritty milk or pediasure. After he was in the hospital this last time they used simply thick which is what he had had in the NICU. I loved it. It made his liquids a smooth gel and he could drink apple juice. But the thickener retailed $70 a box. I checked multiple stores and finally I found an auction on ebay for a box for $15. We won the auction at $18 and I'm not going to complain a bit. My baby boy can now have smooth, refreshing liquids.I didn't realize this day was so extensive until posting this blog. Other highlights, the kids were beside themselves because they got new toothbrushes and toothpaste. They also got new books. Jadzia got a barbie purse book and the boys wanted the same book and decided to share it. Their book is a story about a stuffed horse who is afraid of the dark until a stuffed duck shows him there is really nothing lurking in the darkness. Xander's been having issues with the dark lately so I'm hoping the book will help. Ronan can multitask, he can do chewing therapy and play with his feet at the same time.Tomorrow is going to be a blast. We are meeting my in-laws for food and fun. All in celebration of Isaac's and his dad's birthdays! One last thing. Remember the cleaning challenge that I won? My surprise is being delivered on Tuesday! You'll get to find out what it is then. I'm very excited!!!

Swallowing

Today's events were what I thought yesterday's would be. If you read yesterday's blog that statement makes complete sense. I have a headache so I'm unsure of how coherent this blog will be but 161 days into this blog project I'm not giving up now.

We had our 11:30 visitor and then it was swallow study time. I was shocked about how quickly they got us back to the study. The swallow study is Ronan's favorite test because it involves eating which is hands down his favorite activity. He happily chugged down all the food and drink. The Speech therapist administering the test said she was pleased because usually it's difficult to get the kids to cooperate. I smiled proudly at Ronan as he enthusiastically ate his food.He's still aspirating but it is less than it was so hopefully this means eventually we can quit thickening his liquids. For now since he had some aspiration we're to continue to thickening his liquids. The therapist thought if he was to get tired the aspiration would be worse than what the test showed.

The surprising find was that when he ate the solid food it sat in his esophagus and they are unsure of when it finally went to his stomach because when they ended the test it was still sitting in his esophagus. They're thinking poor chewing may be some if it but since he has esophagus problems from his defect it may be something that requires surgical repair. He'll have to have another test to determine the cause and to determine the next step.

When we arrived home I got a call that they wanted to offer speech to Ronan twice a week. I don't know what to do at this point because this would bring him up to six or seven therapy sessions a week. I love our at home ones but the private ones aren't that close and having therapy that many times in a week seems a bit much for a one year old. I'm tired and I wish we could take a family vacation. But life carries on so I have to decide what's best for Ronan and our family. I'm once again praying for wisdom.

Mixed Up Days

I woke up this morning and ran through the agenda. I had people coming to the house at 11:30 and then Ronan would have a swallow study at 12:30. The location for the swallow study was five minutes away so the two appointments wouldn't conflict. I decided to redo the kids' toy area so it wouldn't look so cluttered and I wanted to get the whole project completed before our guests arrived.
The kids and I worked a good portion of the morning organizing and placing the toys in new containers. I'm not sure if anyone remembers the old set-up from pictures or being at our house but it was a big tote with a lot of toys piled on top. Now the toys are in big drawers and the way they are divided will be much easier for the kids to get what they want without making a huge mess. By 11:00 I was vacuuming and giving the kids various small chores that we needed to have done before I'd feel everything was acceptable for company.We were done with everything by 11:15 and I began to pack Ronan a food bag for his swallow study. I had to provide all the foods he normally eats and a few extra beyond his skill level. I got the bag packed and looked at the clock it was 11:35. I waited for the doorbell and as I waited I made sure we had everything ready to leave right after the appointment. While we were waiting I thought we'd practice stair climbing with Ronan. I brought him over to the stairs and he sat at the bottom of the stairs. Finally he reached one knee on the step above him. He made it up two stairs then stood proudly and looked back at me. This now means the gate will be up full time and I couldn't be happier about that fact. This was an accomplishment for my baby boy and it shows he's getting stronger. I had Xander behind him to catch him in case he fell as I took a few pictures. I noticed after snapping a few pictures it was 11:50 and still no visitors. They knew I had an appointment at 12:30 where were they?
When in doubt check the date book. Turns out both appointments are tomorrow. Oops. It's a good thing I thought those people were late so I actually did what I should have in the first place, check the appointment schedule. There's a reason I have to write these things down. The house was reorganized so I couldn't complain. The fact I thought I had people coming over had been extra motivation.Jadzia cuteness of the day. Jadzia walked into the bathroom today where I was getting ready. She said "Mom, I'm going to have three girls when I grow up. They're going to be named Inara, Hannah and Little Girl."

First Professional Haircut.

36 gallons of water is a lethal dose of h2O. Not because your stomach would explode but because at a cellular level it will break your cells apart. This completely random tidbit is the prominent detail I took away from Biology class tonight. Biology class only lasted one of the three scheduled hours. Ronan is doing well and was released from the hospital around 10:30 this morning. He was awake at about 5:30 this morning but instead of me having to get up with him the nurse took him. She gave him a bath, gave him some milk and read him some stories. They let him keep one of the books they read to him.
After his bath I noticed Ronan's hair was starting to getting long and his cowlick kept sticking up pretty high. I decided we would get Ronan his first professional haircut in hopes his hair would grow out more evenly. While the other kids were down for a nap Ronan got to take a trip to the mall. He seemed a little scared at first and didn't like the water bottle squirting the back of his head. He calmed down and then he sat pretty still through the haircut and would just bury his face in my shoulder. The haircut turned out very cute and he looks like a little man.When we arrived home from the haircut I tried to put Ronan's hearing aides on him for the first time since his surgery and he let out a scream and grabbed his ears. I'm sure his ear canals are sore from having the ear tubes put in but I think some might have to do with sounds being clearer again. I'm not sure how long it's been since his old ones fell out and his fluid began to build up again. I think that hearing that clearly again scared him just as the first time he'd put on hearing aides had left him terrified. I'm going to slowly work back to him wearing them.
Inara is on the move. She lunges everywhere and is getting pretty fast at it. I think I can officially say she's a mobile baby and I think within the next couple of weeks she'll be crawling off belly. She is very close now. She moves her legs forward but doesn't quite have hand placement and movement down.

Adenoids and ear tubes.

Seeing as it is almost 11:00 in the morning this is the earliest in the day I've done the daily blog. The reason is I'm not sure I'll get one in for today if I don't do one now and a lot has already happened today. I got up at 4:30 because we had to be at the hospital by 5:30. I got Ronan up last minute and we headed to the hospital a little early so I could get coffee and stay awake.We sat for awhile waiting for registration but they finally got us back. I thought this would be a sign we'd be waiting awhile for his surgery but before I knew it the anesthesiologist was there to have me sign the consent. I told all the nurses to make sure no one gave Ronan any liquids unless they were thickened. I always have to make extra sure they know this since he silently aspirates unthickened liquids. The last thing he needs is pneumonia while he's trying to recover from surgery.

The doctor came in to see if I had any questions then the search for his C-spine x-ray began. Finally they found his x-ray and the anesthesiologist was pleased that Ronan's neck would be safe for surgery. This made the surgery a go and a nurse came to take Ronan back and I again relayed to this nurse that he could not have any unthickened liquids. She promised they would wait until I was present to give him anything to drink.

I was lead to a consult room and I read my literature assignment while I waited for the doctor to preform his surgery. I was halfway through my reading when the doctor came into the room. He told me Ronan was doing great and just had a little wheezing which was expected given his asthma. He told me to wait in the main area and they would call me when I could see Ronan. I was able to finish my reading before they told me I could go see him. His nurses met me in the hall and the one nurse was in a wheel chair with Ronan asleep on her lap. I switched place with her and took my very sleepy boy. We headed up to the pediatric unit.
I got Ronan settled into his room and they had some special thickener so he was able to have some apple juice. I had to run home and feed Inara and when I left he was sitting up happy and playing with the bear the hospital gave him. He's got the nurse and a volunteer looking after him while I'm away and I'm about to grab lunch and head back up there.
Tonight I have my Speech class and I have to give my first speech. I'm telling the story of how I met Isaac. I'm nervous but I figure it can't be any worse than giving that impromptu speech at Gigi's to all those college students. Worse case I fumble through it and after the semester is over I'll probably never see any of those people again and I tell myself this to get through it.

I'll update more in tomorrow's blog. As promised here is the picture of me wrapped in three rolls of toilet paper. In case you missed yesterday's blog this was Isaac's photography assignment for his class.

Wrapped in Toilet Paper.

Today Isaac wrapped three rolls of toilet paper around me and had me stand ankle deep in snow. As I stood there I held a large wooden spoon in one hand and an oven mitt on the other to signify I was a homemaker. I stood completely still and he took 64 pictures of me in this state. This was his assignment for his photography class. He was literally assigned to wrap someone in toilet paper while they hold objects that indicate their profession.
The kids thought it was pretty funny. The boys thought I made a great mummy and Jadzia thought I was an angel. I have no pictures of the odd scene that took place in our back yard. Isaac does obviously but they're in a different format for his class. As soon as I can get him to release one I'll have to post it so you can get the idea of what our neighbors must have thought.
Tomorrow is Ronan's surgery. Normally this surgery takes place in the outpatient unit but with Ronan he has to be in the main surgery area of the hospital. He will be admitted for at least overnight all for just adenoids and ear tubes. With Ronan's apnea minor surgery becomes a bigger deal. I'm glad we only live five minutes away from the hospital so I can zoom back and forth to feed Inara. My mom has taken two days off work to help me out.Landon made me laugh today. That boy is a walking commercial. He can see a commercial one time and be able to repeat the whole spill word for word. Today he enters the bathroom where I was brushing my hair. "Mom, I just saw a commercial and they said if you send them $20 they'll send you a free toy." I laughed a little and he continued. "Can we send in $20 for a free toy?" I'm not sure where the wires got crossed on that commercial.Ronan and I have to be at the hospital at 5:30 tomorrow which means I have to be up about 4:30 so off to bed I go.