Archive for May, 2006

I’m Baaaaack

May 30, 2006

Every time I see “I’m baaaack” written like that it makes me think of sheep. Just a random thought.

Anyway. I returned to work today. Ben was fine. No apocalypi (what is the plural of apocalypse?) occurred, as I figured.. I had a much harder time with it than Ben did, also as I figured…but I only called home once. 🙂 The best part of it all was being able to come home to him at the end of the day and play with him!

Ben had a rough weekend with the heat and all…actually last week was a rough one for him. His breathing has definitely changed in pattern and speed over the past week…also he slept A LOT last week…he is tiring much more easily now. We also saw some more pronounced color changes. The heat on sunday was brutal to the poor little guy. A friend of Scott’s mom was kind enough to throw us a shower, and it was a great time. Ben was charming and cute, but also retaining water and swelling up like crazy! I am told that cardiac patients have some trouble with swelling (as we all do in the heat) and that it can be more pronounced in the heat. Ben also got REALLY over stimulated with all the people and activity, and would NOT go to sleep on Sunday night. He wanted to stay up and party, but then he was all fussy and crying. Sunday, with more heat, he decided he was just done…we took him to Babies R Us and to a friend’s new apartment, then to mom and dad’s for dinner….abotu half way through dinner, he just started screaming and would not be soothed. We took him home, gave him a nice cool bath and put him to bed, and he slept almost eleven hours!!! Poor little guy had just about had enough. A valuable lesson for Scott and I on how much he (or any baby) can take in the heat.

Today the nurse came, and though she noticed his breathing, color changes and a change in the pulse in Ben’s legs and feet, she said his lungs are clear and working well (good for him, since it’s hard to get oxygen out to his body…clear lungs are important) and that he looked good. Ben has GAINED weight! In fifteen days (we didn’t see the nurse last week…) he had gained ten ounces, rounding out his weight at ten pounds thirteen ounces. 🙂 AND he has grown in length…he is 23 3/4 inches…a full three and three quarters inches longer than when he was born. The good news is that lots of the clothes I thought would never fit him DO fit him…and he is so handsome in them. 🙂

More pictures when I get the chance, we have pictures of Ben’s new trick: holding his head up for short periods of time without too much wobble!

A short hiatus?

May 26, 2006

Well, come next tuesday my “mommy time” will be on a short hiatus….I’ll still have a couple evening hours, but I have to go back to work. It is a short time…we only have two and a half weeks until the end of the year; but it is not making me happy to know that I have to leave Ben every day. My mom will be watching him, so at least he’ll be in good hands. I went in to school for a couple hours on monday, and decided I am not ready to go back. 🙂 Yeah, my kids are the best, but even all together on their very best day, they don’t match up to Ben. Sorry guys!

Scott and I took Ben for his IEP evaluation on tuesday. Basically, a special ed teacher, a physical therapist, a speech language pathologist and a few others (thrown in for good measure) played with Ben and talked with us for about fourty five minutes. The purpose of this is to evaluate Ben’s skills to find out if he needs any help with his development right now. The biggest issue at this point, because he is still so young, is his motor skill development. A very significant issue with Down Syndrome kids is that they have very low muscle tone. This is why Ben’s hands still flop out in the “touchdown baby” pose and why his legs flop out like a frog. Gravity is not kind to him, and it’s hard for his muscles to overcome gravity to lift his limbs. They gave us lots of ideas for positioning Ben while playing with him so that he can start to develop his muscles and get stronger. That is the big issue right now. Next week we have his IEP meeting (IEP = individualized education plan). At this meeting, goals will be set for Ben’s development for the next year. They also gave us some resources to get Ben physical therapy this summer (gotta call the insurance and see if that is covered) and to try and find child care for the fall (still working on this…anyone know any retired nurses?).

Even though I know that all special ed students get these IEP’s each year, and that these meetings will be a part of Ben’s education for as long as he’s here, it was unnerving to be on the “parent” end of the parent/teacher experience. What a great experience for me to have! Parent Teacher conferences make me woozy at school, because I think that the parents are coming in ready to devour me alive (sorry, folks…but it’s a little known fact that teachers fear conferences…I’ve just spilled the beans)…now I know that the parents must feel the same way.

Health wise, Ben has been going through a few more changes this week. His blueness and breathing have undergone another change and have become more prounounced again. He slept pretty much round the clock Sunday through Wednesday, and took two Loooong naps yesterday. He’s definately tiring more easily. His eating is very erratic….yesterday he only ate about three ounces per feeding…and two at nine in the evening. He just got too tuckered trying to eat. Of course, this means he was up at one thirty this morning shouting because he was hungry. And again at five thirty. Coffee is my friend. The nurse is coming today, so it will be interesting to hear what she has to say. Watching him change has become so common place to me…I tend to see things first, then Scott will notice them as they continue. We are wondering if he is entering a new phase in terms of his illness, a step off his plateau if you will. We’ll see.

Big plans for the memorial day weekend….Scott, Ben and I are going shopping tomorrow morning, then there is a shower for Ben on Sunday. Monday will be relaxing and probably dinner with the Corliss Grandparents. In the meantime, we need to find time to mow the lawn and get the tomatoes in the ground, also probably the basil plants (we’ll see…we almost killed them with too much sun a few weeks ago). Ben has had a big week with his IEP and the finale of LOST…his Aunt Karen was over and he just had to stay up and watch it. 😉 I’ll try to get some new pictures up this weekend.

Happy memorial day! Get out and enjoy the weather!

Scenes from a mom’s life…

May 22, 2006

One week left to go before I have to stop being a stay at home mommy and rejoin the working world. Of course, I only have two and a half weeks of school before I get to stay home all summer, so I shouldn’t complain. I will miss Ben and our little schedule during the day.

One thing I have really started to become more aware of when I go out and around with Ben is how BOLD people can be…I remember being pregnant and people telling me that women would try and rub my tummy when I went out in public…that never happened (thank goodness). But now people seem to think they can say anything they want to me, and it will be okay. Case in point:
woman in Costco: “Your baby is so cute, how old is he?”
me: three months
woman: he’s so small! How much does he weigh?
me: yes he is, he’s ten pounds
woman: my kids were both over eight pounds when they were born!
me: yes, he’s small
woman: what’s wrong with him?
me: nothing, what’s wrong with you?

I mean, honestly….this woman really had a lot of nerve. As if I would go into what was wrong with him with a complete stranger, and also as if every baby who is small automatically has something wrong with them. I know I shouldn’t let things like this get to me, but it’s really hard not to when people are so incredibly rude. grrrrrrr.

Scott and I take Ben for his evaluation through the Walled Lake School district tomorrow. The early intervention team will evaluate Ben and how his skills are progressing so that we can start getting him some developmental assistance, if he needs it. Of course, they get out of school in a few weeks too, so they will give us some help for the summer, and we will set up more appointments in september. One thing I have appreciated so much is how much support Scott and I have gotten in our decision to carry out buisiness as usual with Ben…start his education, start looking for child care for the fall…no one has ever asked us “Why are you doing this? He won’t be here in the fall”. I never expected people to say that, but I know there are people out there who would.

So now the question is, how to I make this week last a lifetime…or at least last enough to get me through two and a half weeks of work. 🙂

Happy Mother’s Day!

May 15, 2006

Happy Mother’s Day! I hope everyone had a great day, and that you all did something nice for your Mom. 🙂

Thanks for all the musical tips…keep them coming. I love the suggestions, and I’m adding them as I get them. Itunes is a great gift to music geeks everywhere. 🙂

Since it was raining, we all stayed indoors like slugs, watched DVDs and played with Ben. Not a bad way to spend a day at all. Yes, there were things that needed to be done in the garden, but it was a bit too soggy for all that. Last night we had some friends over to meet Ben for the first time, and he was charming and beautiful…until bed time rolled around, at which point he began to cry and would not be soothed. Mom had to swoop in and take him off to dream land….he’s not such a party animal as he would have everyone believe. 🙂

I won’t wax too nostalgic for you all, but I will say this: since I wasn’t sure I would have a mother’s day with Ben, just getting to have him here is a gift. I have said this to many people, and I want to say it again to all of you reading: I know you are all praying for a miracle. I want you to remember that it is just as important to see the miracle when it happens as it is to pray and believe that one can happen. Ben is still here. Each day is a miracle. Pray not for him to heal, pray that all of us who know him can see his life for what it is: a beautiful gift. When we fail to see that, we fail to see the miracle we pray for.

On a lighter note….

lots of people are waiting for new pictures

Ben’s Greatest Hits

May 10, 2006

It’s so modern of me, but I have a playlist on Itunes for Ben. I started this when I found out I was pregnant, and I’ve added to it…the songs really reflect the journey Scott and I have been on with Ben. I have been thinking for awhile I would like to share with everyone what is on Ben’s list of songs. If you have any songs you think would be good for “Ben’s Greatest”, please comment and let me know, I would love to see this grow. 🙂

The songs, in no particular order:

I Don’t Wanna Miss a Thing – Aerosmith
Baby Mine – Alison Krauss
Forever Young – Rod Stewart
Con Ti Partiro (Time to Say Goodbye) – Andrea Bocelli
Let It Be – The Beatles
Lullaby – Billy Joel
You’re The Love of My Life – Carly Simon
Close to You – The Carpenters
You’re the Inspiration – Chicago
Longer – Dan Fogelberg
The One Who Knows – Dar Williams
Godspeed (Sweet Dreams) – Dixie Chicks
I’ll Take Care of You – Dixie Chicks
Vincent – Don MacLean
Till The Rivers All Run Dry – Don Williams
This Love Will Carry – Dougie MacLean
Your Song – Elton John
How Can I Keep From Singing? – Enya
Everlong (Acoustic) – Foo Fighters
Wrapped Up In You – Garth Brooks
Just the Two Of Us – Grover Washington
Cats in the Cradle – Harry Chapin
Fare The Well – Indigo Girls
You’re Beautiful – James Blunt
Sweet Baby James – James Taylor
Time in a Bottle – Jim Croce
For Baby, For Bobby – John Denver
For You – John Denver
Beautiful Boy – John Lennon
Making Memories of Us – Keith Urban
Ben – Michael Jackson
Rainbow Connection – Muppets
When I Fall In Love – Nat King Cole
Mother and Child Reunion – Paul Simon
In Your Eyes – Peter Gabriel
You’ll Be In My Heart – Phil Collins
Nightswimming – REM
Forever Young – Alphaville
I will Remember You – Sarah McLachlan
Angel – Sarah McLachlan
Love’s Divine – Seal
I Don’t Know Why – Shawn Colvin
By My Side – Godspell Soundtrack, Stephen Schwarz
On Children – Sweet Honey in the Rock
Beautiful Day – U2
Roots and Wings – Linda Hirschhorn with Vocolot

…so there is some pretty obscure stuff on there (don’t look for vocolot on Itunes, you won’t find them…) but it reflects my muscial tastes (and Scotts) pretty well….
Like the best music geek, I could also post for each song the line that reminds me most of Ben, and why each song means something…but this entry would be far too long.

Anything to add? Comment and let me know. 🙂

Every day I write the book

May 8, 2006

It’s hard to write each week and think of things that won’t totally bore you all to death, but some days I need to write just for Ben and I. 🙂 We had a glorious day yesterday and saturday. We all went shopping for flowers for the gardens, and yesterday planted them. I had the idea to put pots outside in our front flower bed to give it a little “height” (well, that’s what the gardening magazines say, anyway)…so we got some big pots and I plunked a bunch of flowers in them. The front bed also got planted with Impatiens and Petunias…and we got two huge hanging baskets of geraniums for the front of the house, also. Ben helped pick everything out, and kept Scott and I company while we planted. The garden is half in…peas are going crazy and Scott is working on a trellis contraption to start them climbing (last year’s idea was not good…so we’re trying something new)….we also got the beans in yesterday, planted new rosemary in the herb section, and a lavender plant too. Ben so likes to be outside, we keep him with us and talk to him as we work…and he enjoys the sunshine. He’s a great supervisor!

Last week I noticed a few new changes in Ben…well, not new, just expected, small but significant. Monday and tuesday of last week Ben slept round the clock….he had good “awake time” the other days…He will go for a few days with a normal schedule (which means three to four hours in the afternoon, and an hour or two in the morning awake) then will have a couple days where all he does is sleep. He’s starting to sleep more. He is also eating slightly less…mostly because eating just tires him out so much. He gets so hungry, then he just stops eating after only three or four ounces. He eats less than a normal baby anyway, and his eating has declined slightly. As I said, the things I”m seeing are small changes, but significant.

We went for so many weeks where it was easy to forget that Ben is not a regular kid…so many weeks where he did so well, that to see him change again is very difficult. It’s hard for me to be home with him all day and watch him just sleep….I feel like I’m cheating him by not playing with him, working on his excersizes, or interacting with him. But if he needs to sleep, then he needs to sleep. It is so hard to remember that Ben needs that rest, and that his body gets tired out so easily.
I think that we will still go for a walk today….the fresh air is good for Ben and I both, even if he does sleep through it all.

Got a nice thought on Email today, and wanted to share:

People come into your life for a reason, a season or a lifetime. When you know which one it is, you will know what to do for that person. When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered and now it is time to move on.
Some people come into your life for a SEASON, because your turn has come to share, grow or learn. They bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it, it is real. But only for a season.
LIFETIME relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person and put what you have learned to use in all other relationships and areas of your life.

Ben gets culture, and other news

May 2, 2006

Just a few tidbits about Ben and how he’s doing.

On friday we took Ben to Cranbrook’s Art museum, they had an exhibition of all kinds of art from people enrolled in their graduate degree program. Scott and I needed to get out…Ben probably liked the art, but since he was snoozing in the Bjorn the whole time, it’s hard to tell. 🙂 (A Bjorn, for those who don’t know…is a front facing baby carrier. It goes on like a backpack but the important stuff is in the front: that’s where Ben sits.) We also went to visit Scott’s grandmother (Ben’s “Big Nana”) this weekend, had dinner and got some plants for the garden. Ben is travleing so much better now and we love getting out with him.

I have even become more adventurous with Ben, in fact last week was a banner week. I gave Ben my first “solo mom” bath, which went well, and we also went grocery shopping together. I had never taken him out on my own before, and it went quite well. Our days are starting to get into a little bit of a routine…up at seven or so, eat, play, eat, play, nap, eat….sometimes there are errands in there. Ben is getting better about his naps, but we still aren’t there.

The biggest news of all is that Ben has started sleeping through the night! He will crash at about six PM, and we give him his last feeding at nine thirty or ten, and won’t wake up until about seven the next morning! He usually sleeps about a half hour to an hour in the morning after he has breakfast, and about an hour in the afternoon…and ALL NIGHT. Now, of course, I put off putting this in the journal…not wanting to jinx anything…and of course last night he was up every four hours. 🙂 Ahh well. Ben lives by his own rules, that’s for sure.

Yesterday we set up dates to meet with the early intervention people from Walled Lake Schools. Sounds like they will give us some tips on how to position Ben and play with him to help his motor skills develop on schedule. We will meet with them at the end of the month. As we have said all along…since Ben is here, Scott and I feel it is important to live with him as normally as possible. This includes his education and development.

That’s all for now, friends. Enjoy the spring weather out there!