Sunday, August 30, 2009

Eleanor at age 1



My little daughter is keeping her momma so busy that it is very hard to write more than a sentence at a time. I want to jot down some things she's doing to keep as a memory for her later. I tried shooting a little video of her yesterday, but as you can see, after just a month of walking the girl is fast! Here is a little bit of what else she likes to do.

Talking: she says mama (directed to me), dada (directed to Doug), nana, baba (I am working on directing this to balls), ahdee (possibly directed to Aidan) and shu (directed to shoes.)

Gross Motor skills: walking, climbing, going up and down stairs, dancing, pushing toys, and riding on scooters.

Fine motor skills: clapping, high fives/high tens, putting objects in & out, pointing, marking on paper (and herself), pushing buttons, occasionally waving. We are hoping she is interested in signing, but so far she just smiles back at us.

Eating: still nurses frequently, also drinks from a straw and sippy cups, she likes and tolerates a little cow's milk and has sips of juice. Recently I asked Aidan, "What's Ella's favorite food?" He replied, "Everything!" Very true! She is especially fond of meats, beans, pasta, yogurt, and a variety of fruits and veggies. Some of her favorite snacks are cucumber slices and black olives. She is very interested in food, which makes it hard to sit on the couch and have a snack while watching tv. Ha ha ha!

Sleeping: She usually goes to sleep around 9 or 9:30 and sleeps till 7ish. Unfortunately, she is very particular about where and how she falls asleep initially (must be in the family room with me nursing her on the computer chair.) So I put her to sleep downstairs every night while Doug gets the boys to sleep upstairs. Then she and I make our way to bed. She sleeps with me in the "girls room" and wakes a couple times thru the night, but quickly nurses back to sleep.

Naps are a bit of an unreliable challenge still. With the boys n school, she is starting to take a morning nap again. So she doesn't take an early afternoon nap and thus Sean doesn't nap. Plus then she takes a short, late nap and stays up later at bedtime. When Sean doesn't nap, it makes it easier for him to go sleep early at night. It's working for us, I suppose.

Playing: She loves following her brothers around and trying to do what they do. She plays cars with Sean or anything else he tries to play with. She chases and rolls around on the floor with Aidan. She loves to carry things around- usually one object in each hand or a little bag on her elbow like a lady. She is starting to be interested in carrying dolls around, but not as much as Sean is. She loves emptying out the pantry cupboard and hiding things like remotes and phones. Oh, and she pretends to talk on the phone, too.

All in all, Eleanor is at a very adorable and fun age, but one that keeps me very busy!

Tuesday, August 18, 2009

Aidan's Dental Nightmare!


Aidan went to the dentist for a 6 mo check up in July and they found some cavities that needed work, they decided to split it between 2 sessions. On the 31st of July he had one side done and on 8/3 they did the other side. We thought it was all good and have been really reinforcing his tooth brushing habits and telling him how important it is to take care of his teeth. He's been doing great, especially after he lost his first tooth and the tooth fairy came leaving a note and $.

8/15 He started complaining that his tooth hurt. He'd been eating strawberries so we thought he had a seed stuck and just kept brushing and flossing his teeth to try to get it out. 8/16 he's still saying it hurts, but we went to church anyway. During church he just curled up in a ball next to me and was shivering like crazy. We took him home and gave him Tyenol. By that afternoon his jaw started swelling up and we knew it wasn't a sinus infection or something stuck. We kept him on pain meds till morning (he was crying every 3 hrs when it would wear off.)

We got him into the dentist in the morning and they discovered that one of the teeth they worked on was very infected. The dentist felt the best option was to pull it. They gave Aidan gas, but Doug said he could hear Aidan screaming all the way in the waiting room. I bet it was awful for Aidan! Yesterday, he just rested, took pain meds and ate soft stuff. His dentist called at 8 pm to check on him and I said he still looked pretty swollen. The tooth fairy came again last night, but Aidan is still very swollen and his cheek has red streaking. He woke up at 2 am crying for pain meds. So he is still on pain meds and I called the dentist again. They are going to start him on an antibiotic now. Poor little boy has hardly eaten anything for 3 days now and just looks awful. I tried to brush his teeth this morning because the smell was awful and he just cried and cried.

I really hope the antibiotics kick in quickly, I can't stand seeing my boy in so much pain!

Side note, my friend Sarah made these cute tooth fairy pillows for my kids. When Aidan lost his first tooth, the fairy left him a note and 2 $1 coins. For this stubborn molar, she left another note and 3 $1 coins. I thought I'd share the first note here in case anyone else needs ideas for a tooth fairy note.

Wednesday, August 12, 2009

Monday, August 10, 2009

A Visit with GiGi


The end of last week was rough. Ella woke up Thursday with a high fever and poking her ears, so I assumed ear infection and took her in to see a substitute doctor as our new one was booked full. Instead, I was told she had a sinus & throat infection and she was given antibiotics. Ella fought fevers for the next two days and finally perked up Saturday. We had planned to go to the monthly Down Syndrome Society of Wichita meeting and then stop in to see Doug's grandma after lunch. We decided that since Ella had been on antibiotics for a couple days that it was probably safe to take her out.

When Doug and I first started dating and got married, I was lucky to get to spend many family gatherings with his grandma, whose name change to "GiGi" (short for Great Grandma) in 1999 when our niece Mackenzie was born. GiGi was living in her own home, on the property of a retirement community, when we first met. It was the home she lived in with her husband before he passed on. The family would gather there for dinners occasionally or GiGi would drive up to meet the family someplace.

Slowly her independence changed. She stopped driving, so Doug's parents or aunt & uncle began picking her up to take her to family gatherings. One Christmas I remember how much fun we had laughing and playing board games together. GiGi would tell stories about her children and her grand children's youth. She was at our wedding and we were so lucky to have her there- the only grandparent for both of us that could attend. She came to the baby shower held for us when Aidan was expected and arrived to meet him shortly after his birth.

By the time Sean was born, she had moved from her independent house into the retirement home so that she didn't have so much upkeep to take care of. She was showing signs of forgetfulness and it was safer to have her around others. I don't think anyone ever sat down and told her that Sean has Down syndrome. We weren't sure that she'd understand what that meant. She just embraced him as another great grandchild. Since then, she moved to a retirement home closer to Doug's aunt and then recently she was moved to another place that offered more security and care for patients with Alzheimer's.

Sadly, we just have been too wrapped up in our lives to make time to stop in to visit GiGi. I can't really explain why. We have had to make so many trips to Wichita over the past two years for medical appointments that we really should of added in the extra hour to visit. I think part of it was that we didn't want to interrupt her routine and another part is that it seems hard to visit with someone that is having difficulty responding back the way we remembered. GiGi's health is still pretty good, at the age of 88, but her hearing is poor and her memory is sketchy. Trying to have a conversation is a struggle and keeping active boys calm is not easy.

Regardless, GiGi really seems to like seeing us and the children especially. She smiles as she watches them explore. They like to give her hugs and climb up onto her lap. This was her first time meeting Eleanor and she liked seeing her great granddaughter's growing walking skills. She followed the boys down the hall to her room and pointed out photos she had up. Sean enjoyed wearing rubber gloves he found and Aidan enjoyed the ice cream cone machine in the dining room.

Now that we've made our way to her new home, I hope we will stop in to see her more frequently. In the past two years, my maternal grandpa, maternal grandma, and step-paternal grandpa have passed on. I lost my paternal grandma and step-paternal grandma in the past 14 years, and paternal grandpa died when I was a toddler. Doug's other grandparents are all gone too. I treasure that GiGi is here to be part of our children's memories. Even if, as Aidan remarked, "GiGi doesn't listen very good anymore." Yep, they have many traits in common. :)

Tuesday, August 4, 2009

He Doesn't Have Celiac!

Yay! Sean's doctor just called with the initial lab results and he does NOT have celiac disease! She also feels he does NOT have reflux and doesn't need to be on Prevacid for it.

However, the red spot in his stomach tested positive for a bacteria infection called Hemicobactor Pylori. The treatment is a course of 2 antibiotics taken with Prevacid for 10 days 14 days. I'm not sure if he will need some sort of repeat test (blood work?) to see if it clears up. She said it appears to be in the early stages so hopefully we can treat it easily.

I asked her if she felt she needed to see him again or doing any other testing to look for physical causes for his feeding issues and she said no. She thinks it is something he will have to overcome thru feeding therapy. Sigh.

While I am somewhat disappointed that there wasn't a clear medical answer found, I guess I am also relieved that he doesn't have a life-long disease. The thought of living with those restrictions was overwhelming.

I guess we are back to square one- praying for him to overcome these aversions and encouraging his therapy. Thanks for everyone thoughts, prayers and advice.

Edited to add: I just picked up his prescriptions from the pharmacy and he is actually taking 2 different antibiotics 2x a day and Prevacid 1x a day for a course of 14 days. Wow! That will be fun.

Monday, August 3, 2009

Celebrating her First Year

Eleanor's birthday is coming up in just a few days and it is just amazing that a whole year has gone by! It really feels like I was just pregnant a few weeks ago, not a whole year! Ella has been such a delight and gift to our family. She really makes our family feel complete and brings so much to our life.

We had an early birthday party for her this weekend with family on both sides. The kids loved having all the cousins around to play with and Ella enjoyed the attention from her grandparents. We thought the party went really well, no mishaps or meltdowns- not even from me. ;)

Pre-party bubble bath.


Not so sure about the flaming cupcake.


Sean's tray of flaming cupcakes- his favorite part of a party.


"This carrot cupcake is yummy! Would you like some?"


"Oooo! For me?"


Lots of help opening gifts.


"Gentle, baby, gentle."


Cousin Adam in the kiddie pool.


Aidan and his "little girlfriend" Morgan. What a couple of cuties!

Saturday, August 1, 2009

Scope is Done, Researching Celiac Disease

Sorry I didn't get this typed up faster, but here's update about the endoscopy Sean had done this past Thursday.

Sean handled the stay at the Same Day Surgery Center pretty well. Mostly I just had to work on distracting him all morning from eating or drinking, as the surgery wasn't until 11:15 and he hadn't eaten since 9 the night before. I heard "Momma! Eat! Drink Milkies!" at least a hundred times in the 4 hours he was awake before the surgery. This is what Sean looks like when you tell him, "Sorry, baby, no eat yet."

Doug took Aidan and Ella to his office to try to watch while he worked and I took Sean to the hospital by myself. I packed his backpack full of things to try to distract him with while we waited. I thought it might be useful to list them here and I'd love to hear what fun things you pack for your kids in these situations. I always find out that I should bring x and maybe not y next time.

1. pull ups and wipes
2. food, spoon and sippy cup for after surgery- important to keep this hidden in a separate bag within the backpack. Otherwise it's just plain mean torture!
3. his lovey blanket, given to use when he was an infant at the Denver Children's Hospital. We use it for naps and it's been to every hospital stay.
4. a few favorite books. This time: Chicka Chicka Boom Boom, Brown Bear, Brown Bear, and The Big Red Barn.
5. 2 Disney Cars toys (McQueen and Filmore.)
6. 3 Madagascar action figure toys.
7. Woody
8. Blank sheets of paper and 4 washable markers.

I also tucked my keys, wallet and cell phone in there. I grabbed about $3 in quarters in case I needed to get a vending machine snack/drink for myself. Sean's favorite item this time was the markers and paper. He just loves coloring and having me draw things for him.

Anyway, the nursing staff was very nice and Sean charmed them. He throws a huge fit about those hospital bracelets, so I put them on his ankle so he doesn't obsess over it. They said he didn't need to wear a gown (very strange! never heard of that!) so he just went back in his clothes & shoes with his blanket. They didn't have to do an IV, just gave him a bit of gas and then did the test.

His doctor came out to see me about 30 mins after they took him and gave me photos she took to tell me what she saw. She said his esophagus looked wonderful and healthy- no signs of food allergy irritation or reflux damage. His stomach also looked pretty good, but had a small red spot that she took a biopsy from. She said it did not look like an ulcer and wasn't too concerned about that. She did find a bit of paper that Sean swallowed (he loves to eat books and must of chewed a bit off while we were waiting!) She said they suctioned it out and moved past it.

Then she got to the short bowels aka small intestine. She said "His short bowels are not healthy. I don't like what I see there." She pointed to white areas and said that she took 6 biopsies from there. She didn't say she knew exactly what it is, but is leaning towards Celiac Disease. She said she should have the blood screening results back on Monday or Tuesday and will call me right away. The pathology results take 10 days, so we won't know anything for certain for awhile.

When the nurses let me back to get Sean he was crying and asking for me. As soon as I held him he said "Momma Milkies! Drink Milkies!" I picked him up and wrapped him in his blanket and they had us move to a semi-private waiting area with recliners. He was also very upset because one of his shoes had come off and he wanted it back on. :)

We had a nice snuggle and milkies, then he ate 2 packs of food and snuggled a bit more. After about 20 mins he was alert and ready to move around. He wanted to look out the window, play peek-a-boo with a nurse, and say hi to everyone that walked by. Meanwhile, the other kids coming out of surgery are crying and generally very upset. I was having a hard time keeping Sean "resting" so they let us check out in less than an hour.

He did fine on the drive home and had no ill effects from the test other than being extra tooty from the air they pumped in him.

So now we are waiting to see what happens next. Of course I have been reading up on Celiac disease like crazy. I particularly like this link. I found this part of that article interesting:
The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.


We are having a busy weekend with family visiting to celebrate Eleanor's birthday, so that is helping take my mind off of the wait. I will try to post photos of her party soon!