Six Flags/EEG/Ouchy

Sunday: We took the kids to Six Flags and it went MUCH better than expected. My brother's family and cousin Steph and her daughter all met us there as well. It was hot but not miserably hot. We kept putting Autumn under the mister fans and she loved getting a little wet from those. We asked if we could take her and oxygen on the carousel and they said yes but never got around to doing so since the other kids wanted to ride other rides and we did not have much time. We stayed from 1:30pm until 4:30pm and then needed to head home because our nurse was scheduled to be in at 6:00pm that evening. Madison was not ready to leave so stayed with my cousin and Gage was SO excited to leave and come home to play his new Wii game...something is messed up with that child...I've never heard of a kid cheering to leave Six Flags. My brother, nephew, and niece
Gage and Steph

Jordyn and Madison about to ride the Mini Mine Train

I had planned wearing out Autumn at Six Flags so she would sleep on the way home and stay asleep for a couple of hours. She had an EEG Monday morning so she was suppose to stay up until midnight and wake up at 4:00am. Well, she fell asleep on the way home but only slept for about 20 minutes. The nurse was able to keep her up until 10:30pm and then woke her up at 4:30am.

Monday: Autumn had an EEG for 7:30am. We left the house at 6:30am...good thing Madison is able to ride the bus for these early appts and Gage stayed the night with Aunt Jen. Her EEG lasted 20 minutes and she slept for about 10 minutes during it. She did awesome! We met with a neurologist afterwards about the results. He said there looked like a slight abnormality on the left side of her brain and he saw it's right where her shunt is located so he said that just may be from the shunt interfering with that part of the brain. Other than that everything looked fine and she had no seizures during the EEG. We discussed starring spells she has but not sure if it's a seizure or just her starring off when she's sleepy. We are going to start documenting them and go back in 2 months. She did stare off while we were in the room and so the nurse saw what we were talking about but they did not seem alarmed by the episode. To know for sure they would have to do a 2 day long EEG and we are not interested in that right now. If she goes seizure free for 2 years then we can wean her off the meds but not until then. I was disappointed because I hoped to get rid of the meds but at least I know we may get off in the next couple of years. Autumn did not fall back asleep that day until 1:30pm and then slept less than 2 hours. Sheesh child! She finally got all her rest in that night and sleeping until 7:30am the next morning which is late for her. She's usually up between 5:30am-6:30am.

Tuesday: Autumn got her first bump on the head. I brought her upstairs to hang out while I cleaned. I put her on the floor and then her pulse ox machine on a drum stool. I forget now that she's more mobile and she rolled over to the machine and pulled it down on top of her. She started beeping so I went to check on her and saw the stool knocked over. Walked over to her and she was holding her pulse ox with the biggest smile on her face and a big bruise and bump on her head. She was so proud she got it down. I applied ice to her head and then took pictures of course. ;)

Wednesday: I started deep cleaning my kitchen and then by 3:00pm had a MAJOR headache and was useless the rest of the evening. I took a total of 4 motrin and 2 tylenol that entire evening and it just would not go away. I did get an hour nap in but most of yesterday afternoon was a blur to me. I feel much better today! James has started working night shift and I'm not thrilled. He works 7pm-5am and so at least he's home for dinner everynight but then I get to keep kids quiet until about 2pm everyday which is going to be really hard this summer. It also takes away most of our days on his days off but we will manage. On his nights off he will be awake just about all night so no nursing on those nights which will be great. I'm nervous to see what his final schedule will be started in July for the next 6 months. I'm use to him getting home at 3am but him not getting into bed until 5:30am means I sleep just about all night without him since I'm up by 6:45am every morning. I brought Gage to bed with me last night though so I could have a cuddle partner and my head hurt too much to put him to bed upstairs. ;)

Just a weekly update

This week has been a calm and normal week. I've had a little more time this week to work of feeding therapy. It's so frustrating to start back at the beginning and Autumn to want food less now than she ever did before. We did pudding one day and I was able to get some on her lips and a tad bit in her mouth but she's still defensive. Another day we did jello which this time I concentrated more on letting her feed me and she enjoyed grabbing the jello and putting her fingers in my mouth for a bite. Right now we are just trying to make her not scared of food anymore. By the end of the session she was actually putting her fingers (which had jello on them) to her lips and getting a slight taste. Autumn has never put toys or fingers in her mouth but lately with teething she's finally putting her fingers to her mouth. She still will not get us put teething instruments in her mouth but can roll them on her lips. It's a LONG process. I had to get this picture of her little curly pig-tails. ;) We tried out a new church this evening. Love that they have Saturday evening servies because it works much better with our family since James works evenings and off on Saturdays for now. It's almost exactly like our old church but even bigger which we were wanting to go smaller but the children's program is great for the kids. Since we can not leave Autumn in the special needs class because of her needing skilled nursing care she went to service with us. It was nothing like the old days when she was a baby taking her to service with us. She acted like a normal toddler. Don't get me wrong, I love she's acting more like her peers now but makes for a distracting service when we can't take her to the nursery. She kept grabbing at her tubes and trying to pull them off the velcro which we attach them to so they will not get in the wheels of her stroller. Finally, I undid them so she could not reach them anymore. She kept grabbing for my paper and Bible which is amazing since she's harnessed in and still manages to move over and REACH! The most distracting part was that she would shake her head and arms like crazy and cause her entire stroller to shake. We wanted to just laugh at her because it was funny and cute but not in church please. ;) So, it will be interesting everyweek. Next week I may just try putting her in my lap but not sure if that will calm her more or make her more mobile and active. Glad she did not cough though and make her vent high pressure and beep...her pulse ox was down so low that only I could hear it beep.

Today we are attempting to take the family to Six Flags. Not sure if taking Autumn with us is a good idea but I'd like to at least try it before it's gets WAY too hot here. I'm also curious to find our if they will let me take her on rides like the carousel with her pulse ox and oxygen. I doubt they will but I'll be checking into it because it would be nice if she could participate in a couple of rides....I think she would absolutely LOVE it. I'm sure I'll have an adventure to tell later on.

Gage is so excited about today...but not because of Six Flags it's because he can not wait to get back home and play his new Super Mario Galaxy 2 game that comes out today....can we say addicted to video games???

Happy 6th Birthday Gage!

Yes, my baby boy is six. He will always be my baby boy though no matter what age. ;) He's been more excited about this birthday than any other. We had a countdown going and he kept saying how much more he will be able to do when he's 6....like better at Guitar Hero and Mario Galaxy and how he will eat all his food. Well, he did eat his dinner well tonight and I was so proud of him. He starts kinder next year (I held off as long as possible) and not sure what me and Miss Autumn will do all day..yeah right...extra therapy and cuddles. ;) Sad to think about sending him off to school because I do worry about the kids accepting his size but I think he's confident enough to handle it...we will see!

This year we had a laid-back easy party. Since we are still new to the area we did not have many people to invite. Grandparents came and cousins. We also invited Gage's new neighbor friends who come over daily and make themselves at home. ;) We had a great time though. We grilled out and had a slip-n-slide, baby pool, sprinklers, pinata, and silly string. Gage said he had a GREAT time.

Here's Nanny, Gage, and Nana after our silly string fight.

Gage making faces as we sing Happy Birthday
My handsome boy

Gage and Autumn chilling on the swing after getting out of the FREEZING pool

Me, Gage, Autumn, and my nephew, Dean

Mother's Day

My Mother's Day began with Madison making me breakfast this morning. It was so yummy! She wanted to make sure I did nothing all day to give me a day off but Gage did not want sissy making his breakfast or lunch so I finally gave in and fixed it for him. ;)

For Mother's Day Madison bought me a new bike with her own money. Sure I suggested it but she has been using my bike since she outgrew her bike and she's like her mommy and has a difficult time spending money on herself and would rather spend it on others. So, I suggested she buy me a new bike since she likes mine and then we could start riding bikes together. James bought me a really comfy seat to go on it. ;) This morning Gage had decided he wanted to take his training wheels off his bike. So, I did and we practiced him riding this morning and I got his first time riding a bike on video to share. ;)

We then came inside and Madison made us pizza for lunch. Autumn and I got an hour nap in. Madison attempted to give me a pedicure but then Gage got in trouble in the middle of it so we gave up. James brought home Grandy's for dinner and then the kids and I took a bike ride this evening. By the time we got halfway around the block Gage had mastered riding his bike, kind of. His bike does not have brakes though so time to get a new one for his birthday. He also does not know to not pedal going downhill so when he was going a high rate of speed about to hit a car parked on the side of the road with it's door open...I got really nervous. He managed to miss the car and then slightly hit a curb to come to a stop. So, there are things we need to work on but I was so proud of him for trying over and over and never giving up. I have such wonderful kids and another great Mother's Day.

However, God did lay a lot of people on my heart today. I prayed and thought a lot about the daughters/sons who could not call their mom's up and hear their voice today. Thought of the mom's who have lost their children and the heartache they were feeling today without getting to hug and kiss their little ones. Also, thought about the want-to-be mommies who are not able to have children of their own and long to experience motherhood. We all go about this day with smiles and talk about all the great things we did and seldom remember those who are feeling pain on a day most people feel happiness. I pray God comforts those women today and that they all know He will supply all their needs today and everyday.

New stuff

We finally decided to get Autumn a "big girl" car seat. She has been in an infant carrrier since she was born and I was unsure about moving her to a sit up seat until her head control was better. I talked with our drs. about it and they said she would be fine with one that could still face backwards so I took the plunge and upgraded her. She loves it. The new recommendations for car seats is to stay backwards until 30 pounds so I plan to do that with Autumn but Gage is not even 30 pounds yet and there is no way I'd have my 6 year old still rising backwards so we will see how fast or slow she will get to that weight. ;) Poor Gage will have to be in a booster seat until he's 8. We took Autumn into a store for the first time today. She's only been to drs, hospitals, the aquarium, church, and houses so far and never in a big shopping store. It had always been easier to just leave her with the nurse while we ran our errands. Well, without day nursing she gets to experience more family time and even go along on boring errands. Sad to say but her first store was Best Buy (daddy's store) to pick us out an entertainment center for the livingroom. We then went to Lowe's to pick out a Bar-B-Que grill and they were already sitting outside so instead of unloading her, daddy just got out and shopped alone. ;) We then ran out of our shopping money so instead of heading to get Gage another twin mattress for his other bunk we grabbed lunch and went home. Autumn could barely keep her eyes open and was ready for a nap anyways.

Autumn's therapy sessions went good this week. I can see it's going to be a LONG process to get her to eat by mouth again and still working on getting her to tolerate larger amounts of formula per hour. Each week that I up her formula amount she gags until turning dusky for a couple of days before she gets us to the larger amount and then does fine the rest of the week. So, speech will be focusing on feeding. OT is focusing on pointing and using fingers more and communication. PT is working on core strength and army crawling. All the therapist were pleased to see how well she's doing and we have LOTS of goals to work towards.

Autumn is also scheduled for another EEG and appt. with a neurologist at the end of the month to see if we need to continue with the seizure meds or not. Her urology appt. went great and all her tests came back good so still no cathing or meds to start and will check back in 6 months. Whew! I had dreamed we would have to start cathing and was nervous about her test results but so thankful it was all good.

This month we changed nursing from 7 nights to 6 nights per week. Last night was the first night without nursing here and Autumn actually slept ALL night. So, if she starts doing better without nurses here we will go back to only 4 nights a week of nursing so Autumn can rest better and only have nurses here when James is working nights in case of an emergency or illness comes up.

I got to go shopping Tuesday evening and spent too much money on home decor and still not done so this week has been decorating week. As we complete each room I will post pictures of all our hard work. Good thing I have Jen, my SIL, to help me shop, spend money, and decorate or I'd be so overwhelmed and at a loss on what to do. ;) Thanks Jen!!!