Jumping and swinging

Hooray for an uneventful week! Seriously, we are so boring...

We finally put up the trampoline which was about 3 weeks over due and that was a family event where we all went in the back yard (aka. 'poo town' right now since I never clean up dog poo back there) and played and jumped and swung and did all kinds of ousidey stuff. Dylan LOVED the swing. We don't go out there enough I guess because she acted like she has never swung before. She thought it was fun to swing so high! Asher on the other hand is a little leery of any type of swinging, flying... moving. And so when you pushed him you had to be gentle or he would lean forward brace himself, hands outstretched and get a panicked look on his face.

Ian is quite the little jumper on the tramp, seeing as how he can actually jump this year instead of just run around in circles. Duncan jumps by him and it still knocks him down though. Good thing he is brave!

When it got late I took the three younger ones in the house for baths while Matthew and Duncan finished up the net. Matthew as having Duncan make sets of what he needed to put on each metal pole. Each set consisted of about 12-14 pieces of whatever and Duncan was making little sets. For those who know Duncan, you know this is a perfect job for his little methodical nature. I was surprised he did so well!

When we were at LouAnn's last Dylan found this microphone that has a few buttons on it. One is a song that we have never heard (but a catchy tune) and then you have the background music, applause and something else. She loved it! So much LouAnn sent her home with it even though it's her cousin MaKell's. Matt commented that MaKell would probably miss it and we didn't really understand why she was insistent we take it. Then. Now we know. She LOVES this thing. She loves music when girls sing and this is a real song, not a lullaby, right at her fingertips!

It has no volume control.

Pretty soon everyone in the house knows the words to this song and we all sing along every time it's on (which is a lot when she knows where it is...). Even Duncan. So the other night Matthew looked it up and it's the theme song for a teeny, pre-teeny, kind of show Victorious.

If we are actually trying to watch TV or something at night or kids are sleeping she will be encouraged (banished) to play in her room.

I sent a few pictures of Dylan to Aunt Melissa to assure her that it was being well loved and taken care of (until is dies from water, aka drool, damage) and she let me know that it was okay that we had it. Then I looked up how much it cost, $18!!!! I sent her another note that told he I felt like we owed her $20 for it (seriously, I had no idea it would cost that much!), and what she said made both Matthew and I actually laugh out loud. She said "Believe me, it's worth $20 to have that thing out of my house!!" Hilarious!

Asher says "mama" only it's more like "mamamamamamama" but that's okay. He is the first to say mom first instead of dad and he is a little mama's boy still so I am good with that. For a little while anyway. He thinks dad is quite amusing so I am sure mom's favor will fade soon!

Dad always gets up with them in the morning and this morning he had to get up early for a call so I was on duty and Ian said "Dad? Dad?" about 13 times before it sunk in he was stuck with me. They won't sit with me though, as soon as mom's up it's time for breakfast! No slow waking up for mom, which is why I make dad do it!

We all went to the park this week and it was fun but it was too windy for Dylan to get out to play. I had her in the stroller with a sheet as a wind barrier and that worked for a little while but then she got fussy and a little walk in the circle around the play group put her right to sleep. Meanwhile the big boys were great playing with each other. Last year we had to keep a close eye on Ian and he does really well now, I only had to save him once. Asher liked the little slide too, he thought that was pretty fun and he would giggle going down!

After we sat in the car for a minute to have a Capri Sun and some nasty fruit snacks that the boys love. Then we loaded back up and were all grateful for the fun hour.

We have therapy next week and I sent Mike a picture of Dylan sleeping the stroller and wished him better park luck than I had. We will see! I have already recruited a park helper/referee/herder.

Baby girl really does take her bows out. Sad face. So much that Shelley just throws them in her bag when she does it! Apparently she just keeps trying to get them out even though they aren't in anymore and she ends up pulling at her hair. Boo. I will still put them in though, once, I have to show that I made the effort! I told Matthew that I think if we left them out for a while maybe she will forget the fun game and he started teasing me "Why? Because she is special needs? She will just forget?" Ha! Actually yes... that would be my hope!

Dylan and the microphone. See how happy she is? Thanks MaKell!

Dylan and the swing. You get the hand because, well... we get the hand.

Cute happy boy! (see my raspberries taking over in the background.
Holy invasive batman.

Just wanted to show the duck fluff we call hair.

Asher always drinks Dylan's food. He races over to it and starts sucking as hard as he can. I hold the things to give him a little taste too, he loves his warm, vanilla shake flavored, tube feeding yuckiness. I am sure I would have a higher opinion of the flavor if we encountered it only going down but we usually deal with it the most coming back up!

Picture day and EEG results

I went to the kid's school on Wednesday knowing it was picture day and thinking I would take Ian in and see if we could get a good one of him too. As soon as I opened the door to the room where the picture taking was set up he acted like I was sending him into the snake pit! Dragging feet, big tears. I didn't get it because it was the big room where they play when it's too cold outside! Toys, bikes, balls! Seriously??

He already looked bad because I tried to get them to not mess up their hair before we left with electronic entertainment and when I took it away it was all over. He was sad all the way over to the school and sad when we got there and then flipped out about the room thing. Ugggghh, of course, it was picture day!

So just as I was resigned that it wasn't going to happen and buckled Ian back in Duncan's class came out in a line to have their pictures taken. All of a sudden Ian thought it was a good idea! Especially because Dylan was in a wagon! (She had just walked all the way to the classroom and Shelley didn't have the heart to make her walk all the way out again!)

That was all it took. Since I was there, I helped with Dylan's pictures and I think we got a good smile (major team effort!) even though it was a close up (the other kid's shots were full body). Ms. Meredith was under the stairs holding her sitting! She took one for the team! After the class Ian was up and I hope it looks cute. Guess we will find out in a month!

I don't think I would normally do Spring and Fall pics but with the option of Ian being included and Duncan's new hair do. Maybe we will... Just a few. Asher might feel left out so no one tell him okay? He will be old enough to be included in next Spring's pictures!

Asa's blessing was on Sunday and we went to Shannon and Tracy's house after for yummy food. Enough yummy food that they even brought left over dinner for us! Love well-rounded, home cooked meals that I didn't have anything to do with! (The first clue I had nothing to do with it would be the well-rounded, the second? Home cooked.) the kids all played outside after, it was a beautiful night to enjoy our "country views" across the street!

Paula called about Dylan's EEG and I was right! Lots of abnormal activity. She said the activity was consistent with kids that have had Infantile Spasms that have now developed other types of seizures that happen to look like IS. This would be Myoclonic. So, that's good... I guess. Is it good? We will likely up her dose of meds since she is still having them but it's been a very bad couple of weeks for her bowels so I want to wait until I see the spasms again before I make the change. It's been a couple of days and nothing. That IS good.

Dylan has reached a developmental milestone that is likely driving her teachers at school nuts. She is now pulling out her bows. Especially her right one! She hardly ever did it at home but I guess I should have known it was happening when she started coming home from school with only one bow on! Well, now she does it at home too! Yay! What price do we pay to have her adorable?

So to that I say, "yay for developmental milestones! She pulls out her bows!" Her Aunt Melissa said leaving them alone will be the next one! So now that her teachers taught her to pull them out maybe they can start working on that!?

Speaking of Aunt Melissa, she came out to help in a big way this week while I went to the Family Advisory Board meeting. Matthew ended up with last minute meetings and we had to make arrangements for me to go. I love when family comes to watch the kids because they pick up around the house, clean the counters and the kids absolutely love the change! My "vacation" was good too! Nothing like feeling like a grown up!

Owie is back in town!!

All of our family keeps asking if Asa is cute and I just keep insisting he is but nothing does it justice like a picture or two!

This is all my kid needs, a little caffeine to stunt the growth! 

But he likes it!

 Asher blending in to the chair... Which was fine with him as long as you didn't make his feet touch the grass! He was having none of it!

Love this look..., with the eyes up, he gives it to me all the time. 

Cute baby starting to look like a little boy! *tear*

Saying goodbye stinks

Especially when you aren't close enough to really do so.

When I first posted about cathing Dylan here I was contacted by a sweet mom, Sara Evans, who told me about her daughter and their experiences with the same thing. I had already been reading their blog and considered her almost famous in the SN moms blogging world. It was her who I asked for advice on cathing and she is the one that reassured me it will get easier as it becomes routine. It was Sara who wrote my "you can do this" email.

Sara's daughter Emily was largely un-diagnosed for a long time but she is in our anycephaly family, she had microcephaly. She is in the final stages of Mitochondrial disease, which I don't know much about but I do know those who have it are taken from this life before they hit the age of 20, most before 10.

Over the last year and a half I have watch Sara's daughter Emily go from a gorgeous, vibrant girl, who was just starting to be mobile, moving across the room for musical toys (sound familiar) and smiling, and needing her very own big girl bed to a just shell of herself. I would venture to guess she has spent 3/4 of the last year in the hospital for many reasons, unexplained, untreated, no one knew what to do. She would get better, and they would get to come home only to find themselves back in the hospital two days later.

When I knew her passing away was coming quicker than I ever expected I took some time to go back over their pictures and videos and revisit how vibrant she was, how much potential she was showing. And then I watched as each new picture of her lost a little of that spark. She was recently trached, and she is retaining fluid in her cels so she is quite puffy even though she remains skinny.

Her mom's updates are heartbreaking. She said she went shopping close to the last time Emily was in the hospital and she saw people smiling and chatting and she couldn't help screaming inside. "How can you be happy right now? My little girl is dying?" Wondering why the world wouldn't just stop.

And the other day she put up a picture of Emily's foot with a caption "I never want to forget the freckle on her left foot." Which forced me to think of all the little things I adore about my kids and thinking about what little thing I would miss the most. Asher's wrinkled up nose when he smiles? Duncan's funny toes? Dylan's cartilage free nose or her 'one'der front tooth? Ian's adorable feet that I fell in love with while in the hospital when he was a newborn?

Most recently they have made plaster molds of her hands and feet and taken hand prints of the whole family. They are also planning to take her fingerprints in clay to make necklace charms.

I think Sara's constant updates on how Emily was over the last year are part of the reason why everyone in the anycephaly family is taking the loss of Emily so hard. We were practically there with her every time she didn't feel well, wasn't sleeping, was having a seizure... but we were also there in her good moments too!

She was taken from the hospital for the last time and placed on hospice about a week ago, they are working on keeping her comfortable in her final days. We will lose her soon. I will spare the details of the painful last update from Sara but please say your prayers for her parents and her older brother. You are also welcome to read some updates on their blog.

Easter 'n Stuff

We had a great Easter, the bunny came and hid some eggs down stairs and Duncan TOTALLY gets the collecting of the eggs this year, but Ian is the 'one egg at a time' kind of guy. I think next year the Easter Bunny will be able to hide them good and the hunt will be on. Along with candy, Duncan got some books and his very own notepad and big boy pens. Ian got books and a Buzz Lightyear blanket and Asher and Dylan got a couple toys. When I opened the blanket for Ian he tried to push the buttons on Buzz... It's a blanket, and the buttons aren't real... but A for effort. Cute boy.

Saturday night Grandma LouAnn came over for dinner and egg dying. Duncan did very well as she taught him how to put the eggs in without splashing, Ian, not so much... and when he took a scoop of the color and took a drink he decided maybe egg dying wasn't for him. So we distracted him with 'can-eee!' in the high chair. I cooked the PERFECT amount of eggs this year and Duncan held on until the end. They are beautiful.

Last week Shelley told me that a student teacher at the Preschool would like to come see me at home and ask some questions for something that she was doing for school. She told me I didn't have to clean for them, but I so did. It was a good excuse to pick up and I haven't had a good excuse for a while!

So on Friday Ms. Shelley and Ms. Meredith showed up. Turns out Ms. Meredith is getting her Master's in Special Education and for a project she needed to choose a child and basically become their specialist and she chose Dylan. Matthew said "Well that was a mistake!" I am sure because he thought will be a lot of work! But I think that might just make a big assignment easier. A lot of things to choose from! She has to do a paper and a presentation. On the Pickle!

So she asked my questions about Dylan, about our family, about the future and more and we chatted for a while. Dylan seemed to think it was pretty darn cool that Shelley was in her house! She really seemed to notice.

I told Meredith I would like to read the paper when she was done, and no pressure, but also that I would likely share it on the blog! I am not sure how happy that made her but she agreed! So...

Ian has finally gotten how to do the matching game on the iPad. He plays a game that goes from choosing something that's different, little puzzles, counting and a matching game and every time it would get to the matching game he would hand it to me to do until there were only two left... then four. And now he does all eight. LouAnn was quite impressed watching him! It is fun watching him play and do things you wouldn't guess he would get at this age. He also likes to color and draw a lot more than Duncan did, likely because he is around it more because I will set them both up with things to do next to each other where Duncan was a busy body and did his own thing a lot when he was two.

I forgot to mention that my niece Eden was very brave one night and she cathed Dylan! It was a huge step as she has watched and wanted to but never actually done it herself. This makes her the first person other than a medical professional or her parents who have done this for Dylan. Pretty awesome and very brave no? She is the first one who knows how to do every bit of Dylan's care now.

Getting ready to dye eggs

Grandma Lou explaining to "slowly roll it in"

Ian being kept otherwise occupied 

Buddies, no interest in egg dying

Signing 'candy' with tired eyes (unprompted, he always does it)

Asher with someone's loot

Duncan found the most eggs, by like... 20 times

Dinner er... breakfast and a show

Happy Easter (she is smiling...)

Every year the 'all kids Easter picture' gets more and more difficult

The best one is somewhere in between this one...

And this one.

EEG and stuff

We took Dylan for her EEG on Tuesday. Matthew was afraid she would crash on the drive and wanted me to go for the car ride. Thankfully Matthew's mom and Melissa we're available to tag team the boys and I was able to go. (And, they picked up around here! Bonus!) We started by keeping her up late and then I got up at 5 to get her up and guess who was already bright and shiny to greet me? Yup, already up at 5. So we played a little, her and I, and waited for the rest of the family. I sent Ian back to bed twice and Duncan once and they slept until 7. Matthew claims they won't go back to bed for him... So he gets up with them at 6 usually! No thanks!

She was tired and on the ride up every time she got the sun in her eyes I thought she was done for but she hung in there. She was so funny at the hospital though because she was falling asleep sitting straight up. Her eyes would roll back and she would catch herself. She looked intoxicated. When it came to setting up the EEG there was a guy we haven't met before, we have only had the girls and they usually tag team and get it done pretty fast but he said someone was running late. It seemed like it took forever and I wasn't the uncomfortable one in that situation. Imagine how long Dylan thought it took! She had three spasms when he was setting it up, I am not sure what triggers them, but she seems to always have them when they are putting the things on her head. Always. Of course they aren't recording then, so yippee, doesn't do us any good.

She went right to sleep but she can't breath well when she is on her back so she woke up a couple times. They want her face up so the camera can record her. Then it was over and she was ticked she only got a half our nap (at best) and we went on our merry way.

Right over to the lab.

I forgot the lab order from Dr. Endo but thankfully the lab was able to get the nurse in the phone and have her fax it over. I couldn't believe I forgot it after telling the nurse like three separate times that there was no need to fax it! Grrr. So she got a quick blood draw again, first try like last time, thank goodness for bigger chutes!

Paula told me she was going to go out of town and if she didn't see the results before she left she would get back to us when she is back in town. Sounds good to me, it's not terribly pressing, we are pretty sure they are Myoclonic. So we wait to see what they find out. I am going to go with a guess and say "a bunch of abnormal activity" who is with me on this one?

We had a ton of plans for last weekend and we didn't end up doing anything at all. We need to get the trampoline set back up for the summer and do a few other things around the house. Maybe next weekend?

It was LDS Conference weekend and due to some family chaos I didn't catch as much of it as I would have liked to but on the Sunday morning session one of the talks was by the grandfather of a child with a 7q deletion like Dylan. (Though no HPE, just a host of other things.) (Some people I used to volunteer with put me in touch with her.) His mom and I had traded a few emails when he was born. We just talked about expecting the unexpected and the usual stuff I talk to mom's about through the NICU. It was a great talk and it was fun seeing pictures of little Paxton on the TV! It will be fun reading it over again and again when the Ensign comes with the transcript. I have already watched it again on YouTube.

Duncan was carrying something the other day and told me it was "Soaking heavy!!" I think he has used that adjective before but I am not sure if I wrote it down!

Ian is super cute with his signs, he will ask for candy over and over and I will tell him no so he will look at me and sign it and I will give in because I am a sucker like that!

The other day Matthew's sisters were asking him to sign things and they said "What's dirty?" and he puts his hand under his chin and signs it. Then they said "say candy!" and finger to cheek he signs it. "More!" and he signs more. Then they said "cheese!" and he puts on this big cheesy grin and says "cheeeese!" Now that's the sign of someone who gets his picture taken too much!

Speaking of sign, we missed a couple of weeks because our sitter was off traveling and signing, and it didn't help that Matthew is teaching in Thursday nights. When it came to this week and deciding if we were going to do it we ultimately decided on no. Sad face. I am kind of bummed but we just have too much going in right now for it to be a priority. Sad!! We know a little, but not enough and frankly without Matthew and I tag teaming the teacher I don't get nearly as much out of it because he signs like we actually understand it all. Kind of a bummer, but maybe we will pick it up again later.

Our first clown cone from BR

He was so cute...

And messy! 

Poor girl

This is the worst part

This kids is surprisingly good at puzzles! That's my boy!

This is usually what we see of Asher when the TV is on...