Sunday, December 27, 2009

Christmas pics

These are my favorites from the day. Daddy showing Goldie how to use her MP3 player.



She's got it!

Tuesday, December 22, 2009

Early Childhood Inclusion

This newsletter was in my inbox today and I thought I would share it. I have to be honest though, I haven't taken the time to read the whole thing. I did enjoy the article on page 6 about Annie. I've seen the DVD she was in at an Early Intervention support group where the topic was routines-based Early Intervention. I found it very reassuring to see how much of what we do everyday is beneficial to our children.

Sunday, December 20, 2009

Right now...


this is as close as Goldie can get to her little brother.

Friday, December 18, 2009

Giving credit where credit is due

Goldie had her quarterly eval this week. I have to say it was fabulous! She has made so much progress in the last 3 months. She now knows over 100 signs and her speech is increasing slowly and steadily. Her fine motor skills have taken off and she is completing puzzles on her own along with beginning to draw. I could go on and on!

So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"

Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.

Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!


Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?

Monday, December 14, 2009

Nasonex

10 days ago I posted about Goldie still not being able to breathe, here. I just wanted to update that things are 100% better. The antibiotics weren't working so her ped had us stop them. Then she asked if we wanted to try Nasonex or Singulair. Nasonex is a nasal spray to reduce inflamation and Singulair would be an oral medication that also reduces inflamation. I opted for the nasal spray because I thought it would be best to treat just the problem area. Wow, what a difference it has made. After less than a week, she breathes quietly through her nose with no congestion. I don't know how long we'll have to keep using it, but for now I'm not messing with a good thing. Its only one spray per day and you don't build up a tolerance to it like OTC nasal sprays.

On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!

Friday, December 4, 2009

The Never Ending Search for Sleep

Its been 3 months since Goldie had her adenoids and tonsils out. Long story short, her sleep is worse than ever.

Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.

Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!

I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?

Monday, November 30, 2009

The Picture

At the end of this post,I mentioned a picture that was hanging in the entrance hall of my midwife's office. Well, I found it online here, so I can share it with all of you. You'll have to select the 4th picture at the top and then the 3rd one on the right. This was the first time I read the text that goes with it. I'm so busy trying to get 3 kids in and out with me that I never stop.

Sunday, November 29, 2009

Tired of turkey? How 'bout some beef!

After two days of turkey, Hank and I were so ready to go pick up our beef for the year. We took the plunge this spring and bought a cow. It's been boarding at the neighbor's with his 3 cows and Hank has been going over to feed them all summer and fall. Mid November they went to the butcher and Hank picked ours up on Friday.

In the past we bought our beef from the other farm next door at a reduced price in exchange for Hank's hard work bailing hay and fixing farm equipment. This is how we live creatively on one income. Since he started his new job last fall it was very hard for him to find the time or energy to help out at the farm. Then there was the problem that they couldn't sell us the amount of meat we needed. Our family is growing and Goldie can already eat as much steak as her sisters! We felt getting our own cow was the next best option.

It is important to us that our kids know where their food comes from and that it be as healthy as possible. I'll guess that you've already heard about the benefits of pasture raised animals or grass fed beef. It seems to be getting a lot of press lately. Our cows were rotated between two pastures, given hay that was grown on the same plot of land, and also fed a little corn to fatten them up. The corn came from the farm next door, so no antibiotics were added. Do we even want to venture a guess as to what this meat would cost in a store?

Now for the numbers. I used to work in accounting, so this is my favorite part.
purchase price of cow $314
price of feed $95
kill/freeze fee $60
butcher fee $265
Total $734
The hanging weight of the cow was 528 pounds which yielded us about 300 pounds of beef. Our cost per pound ends up at $2.45!

Ground beef at the grocery store here is about $2.99/lb. But, my freezer is not just full of ground beef, we have steaks, roasts, and stew meat all at that price. I'm really hoping this puts a dent in our grocery bill. Since I got pregnant and Goldie stopped existing on breastmilk, its been out of control. Not to mention, nothing makes a nesting pregnant woman happier than a full freezer! Except, having fewer groceries to carry home from the store.

Monday, November 23, 2009

36 Weeks!

I had my 36 week midwife appointment today. It felt so wierd to go back, since I was just there 5 days ago. But, weekly visits it is from here on out!

I measured 35 cm. Which is just great! He doesn't seem to be a very big baby and they estimate he'll be about 6 1/2 pounds, no more than 7. I can't wait to see if they're right. I know the u/s I had with Goldie wasn't very accurate. I was offered an u/s today, but declined. My neighbor is going through a complicated pregnancy right now, with weekly ultrasounds and visits to specialists. I see the emotional roller coaster this has put them on and I want no part of it. I don't need any help finding things to worry about.

The midwife also mentioned that there was a RSV outbreak at the hospital they use. (I'm planning on delivering at a birth center.) Healthy newborns from the nursery were testing infected and they had to stop admitting mothers to labor and delivery. I relayed this story to my husband who still thinks a hospital birth may be safer. It just shows that anything can happen regardless of how well thought out and researched our choices are.

I've also been thinking a lot lately about trusting my instincts and intuition with this pregnancy. I'm finding it harder since Goldie was born. My question is this: Did you "know" (in your gut, not medically speaking) your baby was going to have DS or have a feeling that something wasn't right when you were pregnant?

Sunday, November 22, 2009

What do you do all day?

As part of my baby preparations, I wrote down Goldie's routine for the day. My mom will be taking care of her and I want to make it as easy on both of them as possible. Plus, I can go into labor with a clear mind that Goldie's needs are being met. It may also come in handy if anyone stops by to help out after the baby is born.

I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...

Goldie’s Schedule

6:30-8:00 Good Morning!

Potty -Right after she wakes up Goldie pees on the potty. She is usually dry in the morning.

Breakfast Goldie likes: - toast w/ raspberry jam or peanut butter
-Waffles w/ maple syrup to dip them in
-banana
-cereal w/ soy milk (feeds herself so use 2 bibs and a placemat)
- NO cheese, milk, or yogurt
Drink - 50/50 juice (white grape or oj) and water = 8 oz w/ 5 tsp Thick-It
- add 4 drops of Vitamin D (only added to morning drink)
Ginkgo - give .50 ml in the morning (not afternoon or evening)

Get dressed, puts her pajamas away in drawer

Playtime - read books, do puzzles, play babies, watch Signing Time, helps unload dishwasher and puts her dishes away.

10:00 Potty time and snack. Encourage Goldie to drink.

Lunch - 1 orange probiotic and ½ tsp Children’s DHA
- both are on door of refrigerator, use medicine syringe for DHA
-Goldie likes: leftovers from dinner, pb&j, fruit, salad, canned pasta, chicken, salty foods, tuna, and soup
Potty

Nap - Goldie is ready for a nap by 1:00.Sometimes sooner if she was up early. She likes to rock in the recliner and listen to her GloWorm (while I sing along). Sometimes we lay on my bed and I sing to her.

Potty - Goldie usually poops after her afternoon nap. Be patient this can take a long time. It’s a good time to read some books.


So there you have it, a peak at the day in the life of Goldie!

I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!

Friday, November 20, 2009

Measuring Up

We've been humming right along the last couple weeks. Putting food in the freezer for next month and going on a couple field trips. Like these replicas of the Nina and the Pinta we toured last week.



I've been feeling pretty good, just a little uncomfortable by the end of the day. Which is to be expected at this point,especially with a 2 year old. I have no problems gaining weight, 5 lbs in 3 weeks. I think I'm as big now as when I delivered Goldie. So, I was not expecting to hear that my measurements hadn't changed since my last midwife appt. I measured 33 cm 3 weeks ago and again at 35 weeks. I'm worried about the lack of change more than anything. It is in the normal range to be 2cm smaller or bigger than the number of weeks.

I have to admit that I was pretty freaked out when we left. And into the next day. This wouldn't have bothered me 3 years ago. I should say didn't bother me. I measured small when I was carrying Goldie. Looking back it was the only concrete sign that something was up with her. But, now I know so much more. I'm not worried that this baby could have DS. That I can deal with. I am worried that he's not getting the nutrition he needs to grow. What if something is wrong with the cord or the placenta? I just want to get him here safe and sound.

The good news, he is moving almost constantly and his heart rate was good. The previous measurement could have been wrong and he has also changed position and is sitting lower than before. For now I'm making sure I drink enough water and taking it easy. I go back on Monday and if there is still no change I'll go in for an ultrasound. Until then, prayers are always welcome.

Monday, November 2, 2009

Halloween 2009



Here is the best picture I could get. Goldie wanted nothing to do with standing still, she was ready to go! Hank and his friend use a tractor drive the kids around with a trailer and some hay bales. I think that was Goldie's favorite part. After getting out for the first 5 houses she was done and I brought her home. Despite all the candy, all 3 girls were asleep by 9:30!

I wanted to update since my last post. Goldie's ped doesn't have the H1N1 shot. My PCP only had 4 left when I called and Goldie is not their patient so I couldn't get one for her. The health department said they don't know of anyone in this part of the state that has them and I was very lucky to get one myself.

Saturday, October 31, 2009

I did it.

I got the H1N1 vaccine yesterday. After many hours of research and debating in my head I decided to just get the shot. My PCP had them and they were mercury free so I went yesterday morning.

Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?

Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?

I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.

I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!

Thursday, October 29, 2009

More pregnancy stuff

Thanks to everyone who left such reassuring comments on my Pregnancy and PPD post. It's nice to reminded that what I'm feeling is normal for the situation and that everything does work out in the end.

I also wanted to mention that I don't dwell on the serious stuff most of the time. Goldie doesn't allow me any time for that! I am really looking forward to this little guy's birth in December. It will be our first out of hospital birth. There is something I really enjoy about labor (yes, really) and thought this would be the ideal way to give birth. I will not miss dealing with OB's who agree to a birth plan and then change their mind or nurses who can't fathom why I don't want an epidural and have the nerve to tell me "its not fair" when my baby is born before the woman in the next room's. Or staying home until the last possible minute. And don't get me started on that automatic blood pressure cuff. Since we're aware of the various complications that can arise, I am always praying that everything goes well and our baby gets the birth he needs.

Another thing I love about the midwife's office: When you walk in the door their is a series of posters on the wall. I didn't pay much attention at first. Then, I noticed that the first one is of a mother with her baby in a sling. I had to do a double take because that baby had some very familiar DNA! My heart just got all warm when I saw that and I knew I had made the right choice.

Can you imagine that hanging in an OB's office? Gasp

Tuesday, October 27, 2009

Baby Update Week 32 and Post Partum Depression

I know some of you have been wanting a pregnancy update, so here it is...
I'm happy to say I'm feeling really good and everything has been wonderfully uneventful thus far. I'm measuring exactly where I should. (This was an issue when I was carrying Goldie because she was so small.) I think chasing a 2 year old around is an excellent way to stay in shape and prepare your body for childbirth! The midwife did let me know I should be drinking more water. Duh. I spend all day obsessing over how many ounces Goldie has had to drink that I completely forget about myself.
We also discussed the emotional side of pregnancy. Specifically when you already have a child with a diagnosis. I lost something when Goldie was born. My peace of mind. Before, I assumed I would have healthy pregnancies and typical babies. Now, I am very aware of the myriad of things that could happen to change our lives. I no longer feel that "it won't happen to me" because it has. As God would have it, the midwife I saw that day also has a child with special needs. It was so nice to talk to someone who gets all these feelings. She also brought up some things I hadn't thought of. For instance, did you know some mothers in my situation have a hard time pushing. They feel as long as they are still pregnant the baby is perfect and are afraid of that changing once the baby is born.
I also asked about Post Partum Depression. I dealt with this after Goldie was born and would like to be more proactive this time. Again, she understood and suggested speaking to a psychologist before the birth and taking a childbirth class that deals with overcoming traumatic birth experiences. Not that either of think her birth was traumatic, but it certainly left me with some guilt and hurt feelings.

I don't think I've ever blogged about the PPD I had after Goldie was born. I denied it for a long time because I thought it would mean I wasn't happy with her. I also wasn't really depressed. I didn't sit around in my pajamas all the time. I did everything I was supposed to do in a day. But, I was very angry. All the time. I would yell at my kids over little things and then feel guilty, but do it all again the next day. I also had nightmares and irrational fears. There was a recurring dream that Goldie was missing and I couldn't find her. I tried some natural remedies, like taking Omega-3s. But they didn't help and some actually made the dreams worse. Finally, when Goldie was 8 months old I went to my OB and got a prescription for Zoloft. It helped tremendously and I stayed on it for 9 months and then slowly stopped weaned myself off of it.
Why am I worried that this will happen again? I had the dream again. Only it wasn't Goldie that was missing, but our new baby. It was reassuring to wake up and know that I'm still pregnant. I'm also nervous about having a typical baby. I worry that it will take me back to when Goldie was a baby and I will mourn, again, for the experiences we didn't have. Or even that I will miss the things about her that he doesn't have. I loved that chubby neck and the hugs that melt into you like butter.

I hope that all this worrying is for nothing. These thoughts may all disappear once he is here and in my arms. I imagine we will be so happy with him that there won't be any looking back.

Monday, October 26, 2009

Fall Pictures

My 7 yo grabbed Goldie and the camera and took these pictures. She is so thoughtful and know how I love to take fall pictures of them. I think they turned out much better than the ones I tried to take of the 3 of them.








Self portrait of the photographer and her subject.

Sunday, October 25, 2009

Who Stole the Apple from the Apple Bag?

Goldie!



She snagged this right out of the bag on the counter. I took it back long enough to wash it. I figured it would keep her busy for about 15 seconds and was a little doubtful that she had the jaw strength to bite off a piece. I buy the very crunchiest apples I can find. She, of course, showed me that even the crunchiest apple is no match for her!

This has already proved to be an easy snack to give her on the go. I'm notorious for not remembering to bring snacks when we go out. I blame it all on breastfeeding. I always had food on hand when they were babies and it got me into a bad habit of not packing snacks. Anyway, after we went on a nice, long hayride this week I was able to buy Goldie an apple to eat. How convenient? Too bad I can't do that when her drink runs out! (I've been caught without "Think-It" more than once this week.)

Friday, October 16, 2009

Transition - The First Meeting

This week was the first meeting in Goldie's transition from home based to school based Early Intervention services. I still remember the very first IFSP meeting. I think she was only 5 weeks old. There was a woman named Brenda asking me what my goals for Goldie were during the first year. Who ever thought I would be coming up with goals for our new baby? All I wanted to do was feed her and take a nap. Somehow, thought started forming about what I wanted her immediate future to look like. I went back through 8 years of being a mom and watching my other babies grow and decided that is what we would aim for. One thing I specifically remember telling them was I wanted Goldie to eat real food. Not baby food, just like my other kids did. Brenda looked up at me to see if I was serious. Then she said " Well, we'll have to make sure she can do it safely." Goldie did accomplish this goal. I had to compromise a little along the way, but not much. The lesson I learned is that you can't be afraid to aim high. If I had been wrong it would have been ok. We would have given Goldie the support she needed and adjusted our expectations. But, we should always give her the chance to succeed.

Now that I've gotten way off track from my original topic... I admit I've been pretty worried about how this transition will go. You just get used to dealing with one system and now its time to move on to another. I've also never liked the idea that my daughter is part of "the system". I've always enjoyed my parental autonomy and really resent anything that infringes on it. I was laying in bed thinking about how I could be at peace with this process when I realized the obvious. Hank and I are still her parents, we are still in charge. We have the final say in what services our daughter receives. If we don't like what Early Intervention has to offer, we have choices. We can even choose to take her to private therapists and pay for prek ourselves. We are not at the mercy of the system.

I woke up in a great mood the day of the meeting. I made a list of all Goldie's strengths and the things she is still learning to do. (Good thing, because I was asked for these) I also wrote down some questions. Hank was watching the girls, so I went alone. This is fine because he tends to be too nice to people. He's great at compromise and I'm great at sticking to my guns! The meeting consisted of myself, Goldie's current SC, and a man whose title was Early Intervention Service Coordinator. I guess he's going to be the new SC.

It went about as I expected and he wasn't able to answer all my questions. I give him props for admitting that and not just giving me bad information. He asked what we had in mind for Goldie. I told him, "We decided that the Fall after she turns 3 would like to enroll her in a typical preschool setting." That was followed by him trying to convince me to enroll her in the special ed pre-k in March. I simply repeated "We won't be sending her anywhere until the Fall after she turns 3." He realized rather quickly I wouldn't be changing my mind. I did explain our reasoning (new baby), but he just raised his eyebrows and went back to writing. Whatever. I guess he took it personally.

Next came the question of how will Goldie receive services if she is not in pre-k or daycare. He didn't know and told me to ask at her eval in January. Wrote that ? down. I also have to ask how they will implement her oral motor therapy in the classroom.

Then we talked about typical pre-k options. Not far from us is a typical preschool that has slots for students with IEPs and has staff from EI in the classroom in addition to their own teachers. I had already heard about this option and we are very interested in this for Goldie. My big question is how do I make sure she gets one of those slots? I was told "We just put her in there" Yeah, right. I don't believe that for a second.

Finally, came the paperwork. I was asked to sign a paper allowing them to bill Medicaid for Goldie's services. I asked if this would cause a problem if we pursued private therapy. He said "no, well it shouldn't, unless their billed on the same day for multiple services." I said I would bring that form back later. I could have signed "No" and her services would still be free, but I wanted more time to think about it.

Overall, I wasn't impressed. I had some big safety issues with the building. Goldie could have easily walked out the front door. (I know people who work there that have found kids wandering the building) There was no interest in Goldie as a member of our family. There was a brief explanation of why inclusion is a great idea, but segregation (my word, not his) of children with special needs is sometimes necessary. Then it was my turn to make faces.

The best part of the day though - while I was gone Hank decided to play outside with the chainsaw so the girls were on Goldie duty. They got her to sleep for a nap, fed her a snack, and took her to the potty. Where she did number 1 & 2! (Now that's a whole post for later.)

Saturday, October 10, 2009

Transition - Getting Ready

Next week is the first meeting in the transition process for Goldie. She won't be 3 until March and right in the middle of now and then I'll be having a baby. I've been dreading this since our first IFSP meeting. Honestly, I would like to say "no thank-you" and go back to having a "normal" life where I don't have to deal with THE SYSTEM. I think part of the reason I find this so daunting is that none of my kids went to preschool. I was the lone mom in my circle of friends who didn't believe in preschool. I do believe most parents provide all the enrichment any preschooler needs. They have many years of school ahead of them, why let them get burnt out before kindergarten? Childhood is short and I want my girls to have as much of it as possible, TOGETHER. The day will come when they don't share a roof over their heads, let alone a bedroom and these years will be what bonds them for life.

I was all set to send Goldie off to school when she turned 3, sort of. Then, sometime in the last year I started thinking that everything I believed was best for my other children could still be what's best for Goldie. Does she deserve less time chasing chickens and making blanket forts because she has a disability? Is there anything preschool will teach her that I or her siblings can't?

Of course, she does have different needs than her sisters. Can I meet them? Yes. But, I know when I need help. Hank and I talked and (as of now, plans may change as we get more information) we will not be sending Goldie to pre-k in March. Our plan is to send her to a typical pre-k, twice a week, in the fall, following her 3rd birthday. I don't think its wise to send her off to school less than 12 weeks after getting a new sibling. I know from experience that can be a rough time for the youngest.

This plan means we have to decide how Goldie will get her speech and OT services. I thought I had that figured out, until the Service Coordinator was telling me the laws changed back in January. I've been told we can bring her to the school, just for her services. I've also been told the state doesn't allow any one-on-one therapies. Her current OT and ST both feel that all of her needs will not be met by the school district and that she would need private therapy in addition to what the school provides. Fortunately, a pediatric therapy center opened up a mile and a half from our house. Still, my head is swimming with the different choices and if they are even choices we will have. I hope to have some answers next week and a clearer picture of what will happen when she turns 3.

On another note, Goldie met an OT goal this week. The one were she learns to remove her pants. She even went above and beyond and took off her diaper. Sorry, no picture! But, here's another cute one I had to share.



I should add that is a water baby in the sling. It is much heavier than our other baby dolls and is a sneaky way to help Goldie with her arm strength!

Friday, October 9, 2009

My Favorite Thing

Down Syndrome New Mama posed the question "what is your favorite thing about DS?"

It would have to be the way I feel every time Goldie smiles at me or laughs along with me. I get a feeling when she smiles at me that I don't get with my other kids (shh, don't tell). Her pure happiness and unconditional love are contagious. She can change my mood in an instant. Its like looking up and seeing a rainbow. You never get tired of it. Even if you've seen one, you want to see another.


Thursday, October 8, 2009

Electric fences

For 3, maybe 4, months a year our property borders an electric fence. It is about 8 feet from our chickens and the garden. It is so beautiful to get up and have coffee while watching a newborn calf nurse from his mother. I love it here. My children are growing up in the same house I did and playing in the same yard I did. Hank grew up on a small farm, so this property was a good fit for him.

I slowly feel we are becoming our own small farm. There is always something that needs done. Like yesterday. I took Goldie outside to swing. While we were out I noticed the walnuts on the ground needed to be picked up so Hank could mow the grass. I walked over to get a wheelbarrow to put them in. While getting the wheelbarrow I see that the chickens need water. I take the bucket back to the house. While I'm dunking it in the rain barrel I turn to check on Goldie. She is headed toward the cow pasture. Despite my running and screaming, she beat me to it. By a mile. I felt like I was in a race against the electric current. This time we won. The fence wasn't working. (FYI, they don't deliver a continuous shock, it travels around the fence, which is very long. I've been shocked and it hurts, but it isn't dangerous, kwim?) The neighbor called later to see if everything was ok. She was outside and heard me yelling. I told her Goldie was fine, but I was very sore and would be spending the afternoon on the couch. I'm 29 weeks pg, not a good time to start sprinting.

I really believe inclusion begins at home, but I struggle with including Goldie and keeping my sanity her safe. She usually stands and watches the chickens while I get the water. Hank taught her to pull grass and feed it to them. This is very cute, but she's gotten her fingers pecked already.

Wednesday, October 7, 2009

Overwhelmed No More

I've spent the last week trying to get a handle on our home and my time. Over the last year I've felt increasingly overwhelmed by the day-to-day stuff that needs done around here. So, on Saturday I handed over a volunteer job to someone better able to handle it. This is something I should have done a looong time ago. Like, after Goldie was born.

I have to come clean and admit thinking to myself after she was born, "I'm not going to change. I'm not going to let Down syndrome take over my life. I'm still going to do everything I did before. I won't become obsessed with it." Its taken me 2 1/2 years to admit that I have changed, my life and interests have changed and its not as bad as I thought it would be. Down syndrome didn't take over my life, but my love for Goldie has. She demands more of my time than I anticipated in the beginning, but who can think of a better way to spend their time.

The volunteer work I did was bookkeeping. Which is best done without the help of a 2 year old. I tried waiting until she was asleep, but she would wake up constantly and I still didn't get anything done. The bookkeeping kept getting further behind and my guilt kept growing. I put off doing crafts and projects around the house because I felt like I should be getting caught up on the work I was already committed to. I ended up getting nothing done for myself, my family, or the charity. Which led to more guilt.

Now that I've relinquished my duties, my time is once again my own. Like Hank said, "Now all you have to do is take care of the kids." Yep, that's it. HA! HA! But really, I've been planning field trips for them and organizing their rooms. I'm good at organizing when I'm pregnant!

Totally unrelated to this post, but when I was looking at my calendar, I saw that Goldie's first transition meeting is next week. Eeek! I don't feel ready for this process.

Wednesday, September 30, 2009

Maya Wrap Sling Before & After

Before

After


I just didn't think it would be right to wear our baby boy in a pink sling! You can also see where the fabric had really faded. I thought brown would be a good fool proof color to dye it. While I had a big pot 'o dye on my stove I dyed him a couple shirts and a pair of socks. Then the girls had a great time tie-dying their socks with what was left.

Sunday, September 27, 2009

Measuring Growth

I take Goldie for her well checks, they measure her and plot it on her chart. I write the number down and plot it on my charts for her at home. Sounds simple enough. Apparently not.

Last September (18 mos) Goldie measured 32" (81cm). In March at her 2 yr appt she still measured 32". The ped noted that they must have measured wrong at the 18 mo appt because she jumped up on the curve and was now back where she should be. As spring turned to summer and we had a lot of appointments lined up for Goldie there were many more measurements taken. Always 32". Just for kicks, I measured her myself one day. Lying down, like at her 18 mo appt. I got 34 1/2" (87.5cm).

Mel commented on my last post that maybe Goldie was having a growth spurt. When she felt heavier the other morning and her pj's looked shorter I measured her again. I laid her on the hard floor with her head against the wall. I got 35 1/2" or 90cm. I waited a couple days and measured once more. Still 35 1/2".

We were having trouble getting Goldie's last blood work results from the lab, so I had a call in the ped. I asked about measuring growth when I spoke with her. I thought maybe Goldie's low tone made her shorter when she stood up. She explained that your joints compress when you stand up and they have had children "shrink" when they began measuring them standing up. Glad I asked! I gave her the measurement I had for Goldie and she wrote it in her chart.

Speaking of charts, what do you use? We use the DS charts and the WHO charts. WHO charts are based on the growth patterns of breastfed children. The reasoning for not just using the DS charts are that if they are based on children who may have less than optimal growth for any variety of reasons then they may not show a slow in growth as obviously as the WHO charts. If we want Goldie to grow as typically as possible then we need to compare her growth to a larger population of children. I forget where I first read about this theory, but it made sense to me.

Friday, September 18, 2009

New Routines

Thank-you to everyone who has been thinking about Goldie! She is doing much better. Actually, I think she's trying to make up for lost time (and weight) by eating non-stop. I still have to remind her to drink most of the time.



The only time she stops eating is to sleep.

I've spent the last week getting the big girls into their new school routine. I am homeschooling all of them again. Fortunately, the oldest takes online classes through a cyber school, so I only have to teach her math. We have been working very hard to make up the days missed while I was taking care of Goldie. With the baby due in December this is not the year to fall behind!


Mini Me's first day of school!

Saturday, September 5, 2009

T & A Setback

I'm exhausted but wanted to update on Goldie's recovery. Thursday morning she wouldn't eat or drink and was very tired. After lunch when I tried to take her temp she had a nose bleed, so that sent us straight to the ER. They determined the bleeding was stopped, but she was transported to Children's Hospital for dehydration. After some convincing on my part, they admitted her. She was soooo lethargic I don't know why they even considered sending us home. We stayed until this evening. I was very hesitant to bring her home because she was not drinking reliably. Although, she was eating and running around. She's done a little eating and drinking since we got home. I wasn't able to get her new pain meds because all the pharmacies are closed on Saturday nights. (One of the reasons I wanted to stay until tomorrow am.) I'm ready for bed, but Goldie is still up. Why don't any of these meds make her tired???

Wednesday, September 2, 2009

Honey, We Have a Problem

That what I heard when Hank was upstairs putting up the girl's "new" bunk beds. Curious, I go up to see what's going on. He quietly takes my hand and points into our bedroom,at the ceiling. There is a HOLE and BEES are flying into the room. That was definitely not there this morning when I got a shower. While I called exterminators, he set some foggers off in the attic and sprayed some bee killer in the hole. Of course he put duct tape over it when he was done. What man could pass up a chance to use duct tape. That should hold them back until Friday when the exterminators come. I'll be sleeping on the couch in the meantime. Hank assures me its safe to sleep in our room because bees sleep at night. That's nice to know, I'll still be on the couch.

Goldie is doing ok. Her appetite is pretty good, but she's still not crazy about drinking anything. Her sleep has been horrible. She wakes up in pain. I give her the Tylenol w/ codeine. She hates it and puts up a huge fight. Then she's up for a couple hours. So, tonight we're going to try the regular Tylenol. She doesn't like it, but tolerates it somewhat better. Her sleep schedule is off and she takes longer naps during the day. Last night I couldn't get her to bed until almost 12. Then she was up by 5. Right now, she's laying on the couch kissing her baby. Maybe they're ready for bed.

Sunday, August 30, 2009

Post surgery update

Goldie's surgery went well. Her surgeon is very thorough and even had an ICU room reserved for her afterwards. This was a huge precaution considering Goldie has never been hospitalized or had any previous surgeries. However, this caused some confusion as to where we were supposed to go while she was in recovery. By the time her ICU nurse called the waiting room Goldie was awake and really ticked off. I could hear her screaming in the background!

We spent the night for observation and so Goldie could get IV fluids. The next morning we were given the option of moving to a new room and staying to see how Goldie was going to eat and drink or going home. At that point she was eating jello and asking for her drink so I thought she would do even better at home. I thought.

Now I'm rethinking, because it's been a constant battle to get anything in her. At least until Daddy came home from work. She insisted on eating pizza (no crusts) with him and he got her to eat some soup. Then her sister got her to eat some Jello. I think she associates me with the yucky medicine and doesn't want anything I have to offer? The top shelf of our fridge is full of half-eaten foods I've been offering her. I even leave food around the house, hoping she'll find it and start eating. My end table is now covered in some sticky smoothie my mom brought and I keep stepping on Jello. At this point she is still having a normal amount of wet diapers, so we'll see what tomorrow brings.

As far as pain goes, that seems to fluctuate throughout the day. She was miserable all afternoon, but had a really great evening. We'll just keep taking it one day at a time.

Wednesday, August 26, 2009

Before T & A Surgery

Goldie is having her tonsils and adenoids removed on Friday. I wanted to document for myself what her sleep is like now. She has been sleeping through the night most of the time. By sttn, I mean she doesn't wake ME up. When I was sick, I sat up and watched her for an hour in the middle of the night. She must have sat up at least 6 times. No wonder people are constantly telling us "she looks tired."

I think the melatonin has helped Goldie with being able to fall back to sleep on her own. She gets 1-1.5 mg before bed. I read on an email list that melatonin works better in conjunction with omega-3's. I didn't give it much thought until we ran out of Goldie's fish oil. I kept giving her melatonin, but she wasn't sleeping at night. After two nights it dawned on me that she wasn't getting her fish oil. I bought more and she was back to sleeping well again.

Which brings us to last night. Omega-3's have a side effect of thinning the blood so we had to stop giving them before Goldie's surgery. Then we ran out of melatonin yesterday. I went to get more and they are out of the brand we use. The brand I ended up with takes 4 droppers to equal 1 of our normal brand! And the droppers aren't marked with ml. Last night, Hank and I were up with Goldie from midnight until 2 am. That's when he put Signing Time on and stuck her in the pack and play while he slept on the couch. She was tired the entire time she was up. She kept moaning and sucking her thumb. (this is her self soothing technique) Her only nap today was 20 minutes in the van. She fell asleep outside in the swing at 7:30 and was back up at 9. I got her back to sleep and haven't heard from her yet. I'm off to join her as quick as I can. Who knows what tonight will be like.

I would appreciate any prayers or happy thoughts you can spare on Friday. I'm having a hard time just thinking about handing my baby girl over for surgery.

Saturday, August 15, 2009

Summer Sickies

I have been sick for an entire week now with bronchitis. I hate taking medicine when I'm pregnant, but my midwife doesn't want it turning into pneumonia. I figured it would be better to take some mild OTC stuff now than get really sick and have to take more potent drugs later. I don't know where I got this because the rest of my family seems completely healthy. Unless, you count Goldie's weird eye infection. It's not pink eye and is doing much better now that she is also on antibiotics. So, we're going to finish our weekend of trying to rest and get better. Her surgery is in less than two weeks and I want her to stay healthy! I'm stocking up on popsicles and applesauce.

Tuesday, August 11, 2009

Disabled Students are Spanked More

I was a little surprised to read this.

When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)

Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.

And how about my gym teacher that had children sign the paddle after he spanked them with it?

I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.

Friday, July 31, 2009

Updates and an Ultrasound

We had a week of good news!

First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.

Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.

Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.

I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.

Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.

But, not before we found out we're having a BOY!

Monday, July 27, 2009

Summer Salads

Sasha at The Wonder of Wysdom posted about trying to eat a healthy diet while running to appointments and caring for a baby. I can totally relate. I told her I would post this recipe because it has helped us to have ready to eat food in the fridge.

Rice Salad

Dressing:
¾ C. Vegetable Oil
¼ C. Red Wine Vinegar
3 cloves garlic (minced)
2 teas. Salt
¼ teas. Pepper
1 teas. Oregano
1 teas. Basil


1 C. uncooked rice
2 C. celery (sliced thin)
1 C. bell pepper ( I used yellow, red, and orange but a green pepper works fine)
1 ½ C. onion (sliced thin)


1 can each:
Kidney Beans (drained)
Chic Peas (drained)
Black Olives (drained)


In jar mix dressing (shake well)
Cook rice (DO NOT add salt & margarine) and turn into large bowl
Pour ½ salad dressing mixture – mix lightly.
Add remaining vegetables and beans.
Mix with remaining dressing and chill overnight.



I started collecting salad recipes a few years ago. We don't have A/C so in the summer I cook our main course on the grill and serve a salad to go with it. This keeps me from using the oven or stove and heating up the kitchen. For this recipe I would cook the rice at night or in the microwave. Oh-I should tell you, don't let that picture fool you, this recipe makes a lot. We always have leftovers.

Sunday, July 26, 2009

Drinking and Swallowing Update

When we saw the ENT last week I talked to him about the lack of follow-up after Goldie's swallow study and we discussed what recommendations were made. The only suggestion they had was that "Goldie drink in a seated position that provides head and neck support as opposed to sitting on her parent's lap or being allowed to stand with her cup." If the SLP had told us this I would have let her know that Goldie has had many incidents of choking on her drink in her high chair. Even if it did help her to drink safely, I can't limit her to drinking only when we she is in a high chair. She was on the verge of dehydration and not drinking enough at mealtimes to meet her fluid needs.


So, by last Saturday I was fed up. Goldie had only had 4 oz to drink in a 24 hour period. I went to Walgreens and bought some Thick-It. (I chose Thick-It because it only contains two food based ingredients. Some of the other thickeners had preservatives in them.)It took some trial and error to find the right consistency, but we did it. Within 48 hours Goldie went from drinking 4-8 ounces a day to 20!!!! She slacked off a bit after that, but has now been drinking at least 16 ounces a day for the last 4 days. I'd like to see her eventually drink more than this. Her post-op instructions suggest 32 ounces a day. I imagine this varies depending on the size and age of the child.

I really wish I had taken matters into my own hands sooner. Goldie hasn't had any bouts of constipation this week. I did receive a copy of her swallow study in the mail (2 days after speaking to the ENT) with the contact information of the SLP we spoke to. I'll have to call her and let her know what is working for Goldie.

Lately, the insurance benefit statements have been rolling in for all these tests and specialists. I told Hank they should be glad we have insurance (as am I) because if I was writing the checks not everyone would be getting paid. The SLP being one of them. Maybe this is part of what's wrong with our healthcare system. They collect a check wether they do a good job or not. This is the other doctor that wouldn't get a check from me. I wish there was more accountablility.

Tuesday, July 21, 2009

C-Spine X-ray numbers

I called Children's and they got right back to me with Goldie's test results. Her bloodwork was normal. I was so anxious about her x-rays I didn't ask for any numbers. Then, the nurse said there was a concern about her x-ray. There is some instability and she is waiting for the ENT to let her know if we need to see the neurosurgeon. (I would feel better if we saw the neurosurgeon.) I asked what her numbers were and she gave me these: extension 2.5, neutral 3.5 and flexion 4.4. I wasn't writing as she was talking so this is what I pieced together (from my prego brain) after I hung up. I may have the flexion and extension reversed? I felt better after hearing the numbers. They sound like they're within the acceptable limits. I'll sleep much better tonight!


ETA: I got a call from Children's this morning that Goldie needs to see the neurosurgeon. Her ENT needs to know what precautions to take during surgery. I made an appointment for next week.

Monday, July 20, 2009

ENT Appointment, AAI x-ray

Goldie's ENT appointment went really well. He answered most of my questions before I could even ask them. He wants her to stay overnight, so I didn't have to ask for that. We discussed the possibility that her stay could be longer if getting fluids in her becomes a problem. I really like this doctor, he was very attentive to our conversation and thoughtful in his responses.
Goldie's apnea is in the mild range so he feels the surgery should eliminate most of it. Her tonsils are big, not huge, but big enough to cause the mild sleep apnea she experiences. Of course this can vary on any given night depending on what position she sleeps in or if she is sick.
After our appointment they were able to do her bloodwork and her AAI x-ray before they closed at 5:00! I was impressed.
I'm not able to hold Goldie for the x-ray, but Hank was supposed to meet us. However he was still at work in another state. So, a nurse held Goldie while I waited in the hall. In the hall was the computer that the x-ray pictures come up on. I immediately noticed a gap between her first and second vertebrae. Of course I have no idea how much of a gap is normal, so I've been worried sick ever since we left. I asked how soon her x-ray would be read and was told tomorrow. I was not going to ask the tech. Lesson learned from the sleep study. I am praying everything is ok. My mind always imagines the worst case scenario. The funny thing is, if I wasn't unexpectedly pregnant I wouldn't have pushed the sleep issue and she wouldn't have had her x-ray until next year. So, if its normal I can relax, and if it's not we'll be glad we know so we can keep her safe and do whatever else is necessary.

Sunday, July 19, 2009

Adult Content?

I finally got around to getting new anti-virus software after mine expired a couple weeks ago. It also has parental controls. After installing it, I tried to view my blog and got this message:
You were blocked by CA Parental Controls
URL: http://www.livinforthelove.blogspot.com/
For the following reason: based on the category
Category: Adult

There are other categories. Such as sex and weapons. Hmmm, what to write about next...

Thursday, July 16, 2009

Sneek Peek at the Sleep Study Results

I took Goldie to the pediatrician this week to get another script for her bloodwork. She was more than happy to add zinc and selenium. She also wants to check her calcium since she's been constipated. She agrees that is most likely due to the lack of fluids. Goldie has been drinking more, but she's not happy with her chin to her chest everytime she takes a drink. I will be talking to the ENT about that next week. (BTW, I kept my journal, but the SLP at Children's never followed up with us.)

So while I was updating her on Goldie's health she mentioned that she had the sleep study results. I was so excited to get them before our visit to the ENT so I can have all my ducks in a row when we get there. The results are... abnormal sleep pattern due to an obstructed airway. Recommend removal of tonsils and adenoids.

The ped. reminded me that we don't have to follow the recommendations, the choice is ours if we want surgery or not. (I don't know what our other options would be. We can't not treat her sleep apnea.) What I want is for Goldie to be able to sleep at night and wake up rested. The last two nights have been awful with her waking constantly. Even with an extra nap she is still exhausted by dinner time. Sometimes crying and hitting her herself in the head. (headache?)

I have to admit my first reaction to the results, was to laugh and say "no, really?" I'm not happy that Goldie has sleep apnea, but I'm thrilled to be vindicated. This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution.

So, if anyone has any suggestions or knows anything I should ask the ENT about, please comment!

Monday, July 13, 2009

Little Things

Goldie's done some really cool things this today and yesterday. They actually aren't so "little" to us.

1. She can not only climb the ladder to the slide and go down by herself, but she climb the slide. It was hysterical! She made the funniest noises as she worked her way up and we cheered. I got the camcorder and of course the battery was dead.

2. We went for a walk tonight and ran into the neighbor (about 30 ft from her house- this is important later) whose little boy also has DS. Goldie has not been to their house since fall. We decided to walk with her back out to the end of the road, almost a mile. On our way back, when we reached her house, Goldie looks at her and starts waving and telling her bye-bye. She knew it was her house! The thing is, she wasn't stopping at her house, so there was no talk of good-byes. Either Goldie knew we were in the general area where we met her or she has picked up on who lives where from our conversations in the van. Makes me wonder what else is going on in her head that I don't know about!

3. She put 2 signs together for the first time. I started teaching Goldie her letters by using the Starfall website. B is her favorite. I like the large, easy to read type for her. I knew the letter C had some nice big pictures that would be easy for her to see. Well, the cat page has a little cat that runs around the screen at the end and she just couldn't get enough of it. She kept signing "more cat"!

Saturday, July 11, 2009

Physical Therapy

Maybe it's the pregnancy (all ready?) but I'm beat from chasing Goldie around by the end of the day. Well, actually by lunch. I've been questioning whether she still needs PT. I know there are things she still has to do, like running and jumping. I have the book Gross Motor Skills in Children with Down Syndrome and spent some time this week looking over the checklists. Out of the 45 motor milestones there are only 9 left for us to work on. We also continue to help her build up endurance and strength.

Hank and I talked about it and we really feel that we can handle these last 9 on our own. It helps that Goldie is such a physically motivated girl. She also has 2 sisters that keep her moving, a swing set, riding toys, and the country side at her disposal. PT has been one of the easiest things for us to do as a family on a consistent basis. Just this week she mastered climbing the ladder to the slide all by herself. I'm so proud and scared all at once! At first she would only do it once. Now, she does it over and over. I love to see how strong she is getting.

Now, how do I tell the PT? She's been coming for 2 years and when we dropped from every week to 2x a month I could tell she was disappointed. My eyes got all wet just talking about it. Hank said I'm just being an emotional pregnant woman. The PT was here yesterday and I couldn't bring it up.

I've really grown to like her. We chat about our families and she is great at showing me how to help Goldie. But, yesterday she said something that's been bugging me. She asked me about Goldie's swallow study and if she was drinking any more. I told her how that was going and went on to tell her about taking Goldie swimming. Goldie has never really enjoyed swimming. She usually hangs on my neck, then I pry her off of me into a floatation device and try to keep her moving and happy. I realized this week that what she hates is the water going in her mouth (she chokes and gags). If I hold up the front of her floaty or if she holds herself up she is much happier. I think this is also why she doesn't like me rinsing her hair during her bath. Getting back on track now, I tell all this to the PT. Her response, " I don't know. Are they smart enough to make that connection? Really, are they smart enough to know what will happen when they get in a pool?" My response, absolute silence. Did she mean any 2 year old or does "they" mean kids with DS? I have a 2 yo niece and I don't think anyone would question if she could make that connection. Am I being overly sensitive?

After that conversation I'm not as sad about letting her go. While I like her, she has never set very high expectations for Goldie. She was always a little skeptical when I told her Goldie had learned something new. I had to add walking to her IFSP last year.

And since I finally got the camera back from my husband, here is a picture of Goldie smelling a flower "with her nose, not her hands."

Sunday, July 5, 2009

Sleep Study

Finally, everyone is in bed, so I'll let you know how the good ole sleep study went. First, the tech was very pregnant and did not want to be there. I can sympathize, having been 9 months pg three times in my life, so I cut her some slack. But, I don't think she would have had much personality anyway. More on that later.




Before we start, she insists Goldie be strapped into a papoose board to attach the wires to her head. I was initially resistant, but I knew it would go soooo much quicker if I didn't have to restrain her and this way I could actually comfort her. It took 30 minutes to get that part done. She cried some, but was consolable and liked it when I sang to her. And why didn't someone tell me the use a mini air compressor to attach those things? I think that scared her the most. Another 15 minutes to put on the belts and hook up her legs. After that she was exhausted and only nursed a few minutes before falling asleep.







During the night she woke up at least every hour. I was able to get her back to sleep rather quickly and only had to nurse her one more time. We were done at 5:30 and on the road by 6. She was so excited to get in the van and didn't even fall asleep on the way home. I stopped at McD's and got her a hashbrown. She has her own sign for McDonald's. Sad, I know.

Back to the tech. I like to get along with people who are messing with my kid, so I tried to make small talk and stay very happy and cheerful. She explained, more than once, that if I couldn't handle Goldie being strapped down we could quit and go home. I told her that being a mother of 3 had seasoned me. I've held kids down, for dentists, bloodwork, stitches, x-rays, casts, etc... so this was really going to be ok. As long as Goldie was able to calm down and not crying till she puked we'd be fine. Then she asks "So do your other kids have Down syndrome, too?"

Go ahead, read that again if you need to. Hank and I have been asked a lot of things, but this one takes the cake. I laughed and told her no. Seriously, how can you work for a children's hospital and not know this isn't hereditary.(I know you can carry a translocation, but those are rare and not all translocations are hereditary.) She acted like they had seen a lot of kids with DS come in for sleep studies. I hope she's not a nurse. I'm wondering what kind of schooling she had to qualify her for this job. Did it include a biology class? When I got home Hank told me I should have said "I caught it from my husband and now the kids have it. We don't know how to get rid of it." LMAO.

I was also told repeatedly that "all kids with DS sit up in their sleep." Umm, don't they only see the kids that don't sleep well. If Goldie wasn't sitting up and waking frequently, I know we wouldn't have been there.

On a positive note, I didn't get any crap about breastfeeding or laying with Goldie to feed her when she woke up. They get a thumbs up for that!

We'll know the results in two weeks. I wasn't asking the tech what she thought.

Friday, July 3, 2009

Cha-Ching!

Just a short post to brag on my little girl! Today, during Vision Therapy, Goldie put coins into a piggy bank. Real pennies, dimes and nickels into her sister's piggy bank. Wow, we were blown away! She was even able to find the coins on our beige, brown, green carpet. I'm starting to think she may not qualify for the diagnosis of legally blind anymore!


I'm off to make raspberry jam. I'll be back later with a post about Goldie's sleep study this week, with pictures. :)

Thursday, June 25, 2009

Goldie's Drinking Journal

Thought I would post what I have so far of the journal I'm keeping in regards to Goldie's drinking and swallowing. I definitely see a pattern emerging.

6/23/2009
Goldie took a couple sips with her chin tucked and did well. At dinner she was holding her cup and drinking with her head up. A lot of liquid came back out of her mouth and she started coughing.

6/24/2009
Goldie was not very interested in drinking today. Before bed her sister made a glass of chocolate soymilk and let Goldie try some. When we made Goldie her own cup she drank most of it with a straw. She did well drinking with her chin tucked. She sat on the living room floor and was able to hold her cup in front of her chest by herself.

6/25/2009
Not interested in drinking this morning. I think my milk supply is increasing because she was nursing a lot and had two very wet diapers.
Goldie woke up thirsty from her afternoon nap. She took a long drink of juice (chin tucked) and did well. She continued to drink well throughout the afternoon and dinner.
She was eating dinner in her highchair. I have to hold her cup off to the side so it is low enough for her to drink safely. When she held the cup herself, above the tray, she began coughing and pushed her drink at me.


Prior to the swallow study we didn't know that her chin needed to be down throughout the entire suck and swallow. I would offer her drink lower so she would have to bend down, but I wasn't making sure she held that position until she finished swallowing. I'm thinking that drinking from an open cup will be tricky until she outgrows this. Less mess for me, right?!

Tuesday, June 23, 2009

Swallow Study

Hank and I took Goldie for her swallow study today. She did incredibly well! Which is good and bad. Its good that she is capable of swallowing safely, because she did it for them. But, I swear she aspirates 90% of the time she has a drink. So they managed to catch her the other 10% of the time. They think it may have something to do with her head posture, so now I have to keep a journal for a week so we can figure out what will work. Her head needs to be tilted down through the entire suck and swallow when drinking from a straw. I wish they had thought to have her drink with her head up while they were doing the test. Oh well.

After we got to the van, Hank tells me that they asked him if she had trouble sleeping. He said, "Yes, she has a sleep study next week" They said to let them know how it goes. I'm wondering if they saw some reflux and that led them to ask about her sleep? I'll ask when she calls next week.

Another good thing, there was no negativity toward Goldie still breastfeeding. She asked if I planned to wean her or continue after the baby comes. I told her I would like for Goldie to keep nursing after the baby arrives. She wrote it down in her paperwork and moved on to the next topic. It was nice not to have my decision questioned or looked down on.

As for myself, I started taking Unisom on Sunday and I feel like a different person. Not back to my old self but almost!

Saturday, June 20, 2009

Not the end of the world

I try to steer away from writing about certain family members and their backwards way of thinking, but I'm guessing I'm not the only one who runs into these kind of people. I just don't get why some people think its better to be dead than have a disability.

We went to a graduation party today for a young man I used to babysit about 10 years ago. Hank and his family were neighbors. I would watch their three kids while the parents went bowling until I had my first baby. Then, the mom watched my dd part time when I went back to work for a few months. Its hard to believe two of those three have finished high school.

Anyway, the topic of John & Kate +8 came up which led to the topic of a certain mom who had 8 babies when she already had 6 children at home. Then of course someone has to mention that they think "two of her kids have autism and one is half blind."

To which I say "Goldie is half blind, I'm sure he'll be fine."

At this point Hank has some wierd expression on his face I don't remember seeing before. The family member goes on to tell me "well you can't tell" No, I guess if you've been living with your head in the sand you wouldn't notice. Hello! She was at the zoo where my kid couldn't see the animals last month. She is the same person who sat across from Goldie last year calling her name repeatedly while Goldie looked around trying to find who was talking to her. How clueless am I supposed to believe she is?

So she changes the subject to a cousin that uses his peripheral vision and how strange she thinks that is. Hank finally told her to be quiet because she was being rude. BTW, he left early and finished the party at home.

This whole thing just pisses me off. Goldie is 2 and I feel like she has learned NOTHING by having her in our lives. Everytime she talks about someone with a disablity it is with such pity in her voice. She shakes her head, sighs, and looks at the floor. Of course, for her to learn something from Goldie she would have to admit that she has a disability. I just want her to see that you can have both a disablity and a happy, fulfilled life.

Friday, June 19, 2009

Getting better

The morning sickness is somewhat better. It improves throughout the day. I had my first appointment with the midwife and she suggested trying Unisom and a time released B vitamin. I haven't tried it yet, I'm afraid it will make me mroe tired and I don't need that.

Goldie had a sore throat and fever last week. How do I know her throat was sore? Her sisters both had it first and were over it in 48 hours. So, when Goldie woke up with a fever I knew she had the same virus. Too bad it took her almost 5 days to get better.

Then I came down with a head cold and I think Goldie is next. She sounds a little stuffy. Sorry this isn't a more uplifting post!

Did you know morning sickness is contagious? Yep, my kids seem to spend as much time laying on the couch as I do now. Maybe more. Goldie now walks over to the toilet and spits in it. Then she looks up at me and laughs. She's definitely the bright spot in my days.

Saturday, June 6, 2009

Vision Evaluation

This week the director of the Toddler Program at the Western PA School for Blind Children came to do a vision eval on Goldie. She was here for almost 2 hours! Goldie and I were so wiped out afterward that we had to cancel speech that afternoon.

The eval confirmed some of what I knew, but taught me a lot that I didn't know. I knew her peripheral vision was low. She was able to tell me specifically that it takes Goldie a long time to see movement with her peripheral vision, but she picks up light faster. So, a dr using a light to test her wouldn't get truly accurate results.

I asked about how we can help Goldie become more interested in her toys. Her answer was basically that we are going to have to think out of the box and adapt her toys ourselves. Using a black marker to outline pictures in books or painting the pop-up figures on her toys so that they are more visually appealing to her were some suggestions. I have to admit after I heard her ideas I thought to myself "Oh, yeah. That is so obvious. Duh."

She left me a folder packed with information on Goldie's diagnosis and how we can adapt her environment to help her. I tried to link to the program in another post, but the next day they changed their website and now the page is gone. The new site doesn't even mention the Toddler Program, but I can tell you it is a free service for children living in Western PA with visual impairments. When school resumes in the fall they will send a team of therapists to do a more comprehensive evaluation.

Sunday, May 31, 2009

Last Week of May

Well, I've gone from feeling blech to throwing up morning, noon, and night. Lovely. I was sick like this with my oldest, but I don't remember the middle two being so bad. I had to tell the speech therapist no more 9 am sessions. I would love to take a month off, but I would feel to guilty if I did that to Goldie. Then again, she seems burnt out herself some days.

On Wednesday the big girls had dentist appointments. (No cavities!) While we were there I mentioned that the DS Center suggested Goldie start being seen by a dentist. They suggested letting her take a ride in the chair and not upsetting her by trying to actually clean her teeth. So she had a good time sitting in the chair and playing with all the tools they use. The hygenist was great and really talked to Goldie just like she would any 2 year old. She has an appointment to go back in 6+ months with her sisters. Since I wasn't expecting them to actually look at Goldie's teeth, I didn't bring my camera.

On the sleeping front, things continue to improve. In the last week, Goldie has slept through the night, 4 times. I still wake up now and then and I've seen Goldie sitting up in her sleep a couple times. So, I think she is still waking up, but is having an easier time falling back to sleep. I scheduled her sleep study this week. I asked to wait until July, hoping I will feel better. I can't imagine taking her if I am still throwing up this much.

I'm off to sew Girl Scout patches, tomorrow's the big picnic!

Monday, May 25, 2009

Must be the pajamas

I woke up at 5:45 to the sun trying to peek through the clothes-pinned curtains and I realized Goldie hadn't made a peep ALL NIGHT. I checked to see if she was still breathing. Twice.

Then I spent 15 minutes trying to figure out what I did "right" the day before. The only thing I could come up with was I brought Goldie's summer clothes down from the attic, so she was wearing her "new" summer pajamas. I felt bad, her skin was cold when she woke up because she won't keep a blanket on.

She finally woke up at 6. We cuddled and went back to sleep until 8:30!

Trying to get the camera.

"Mom, no more pictures!"

Saturday, May 23, 2009

Goldie, sleep, ENT

The morning sickness has left me feeling blech all morning and most of the day. Never the less, we managed to plant the rest of the garden and move the peeps into the chicken coop this week. We've had some great weather.

I usually blog at night after Goldie goes to sleep. That isn't working so well anymore. I'm ready for bed shortly after she is and I've really been trying to get her into a better nighttime routine. I bought her a sound machine (I love the rain setting) and we've been using melatonin before bed and once during the night. This has helped her sleep for 4 hours straight, until 1:30 and then she gets up 1/2 as much from then on. The sound machine has helped her with putting herself back to sleep. So has keeping the room very dark.

It was easy to find research showing that children with learning disabilities have trouble sleeping and visually impaired children have an even greater rate of sleep disturbances. However, there doesn't seem to be any research on why, except for children with visual impairments. A child with a VI may not see enough light to regulate their sleep cycles. At first I thought this could be Goldie's problem, but she wakes up as soon as the sun peeks over the horizon. Sometimes sooner. Like 4 am. We call her "The Rooster". Or maybe she actually hears our rooster crowing at that hour. Hmmm. Anyway, after reading this article and doing some more research we decided to go ahead and try the melatonin. I bought her a liquid so we could find the smallest effective dose. She is no longer waking every 45 minutes and does appear more rested, but we still have some more work to do.

I took her to the ENT this week. He said she would benefit from a sleep study and that even if it is negative for sleep apnea it would help us to have that ruled out. He also ordered a swallow study. I brought every single cup we've tried teaching her to drink from just to be sure I didn't get blown off. He is positive she is aspirating and that is why she doesn't want to drink anything. He didn't know why she doesn't seem to be aspirating when she nurses. She certainly doesn't have an aversion to that! LOL! I'm guessing it has to do with positioning.

Goldie's OT is on maternity leave so she has someone new for the next 3 months. I really like her, too. It's been nice to have a fresh set of eyes watching Goldie and offering new suggestions. I kinda feel bad because Goldie seems to like her much more than the regular OT. She is very laid back and just "plays" with Goldie. I don't think Goldie has even realized that she is a therapist, yet.

Sunday, May 17, 2009

Next on the agenda

I scheduled an evaluation for Goldie to see if she qualifies for this program. I should have done it last year, but I didn't know how to fit anything more into our schedule. I'm still not sure how it will all work out. I just know we need some new ideas and suggestions on how to get Goldie to actually play with her toys for more than 2 seconds. ANd I would love to have some idea as to what she can actually see. We went to the zoo for Mother's Day and I think the only animals Goldie saw were the fish in the aquarium and maybe an elephant. I kept telling her to "look" and turning her head and pointing. I'm not sure she even understands what it means to "look" for something. I know she can indentify what the animals are because we read books at home and she can match some of her toy animals to the pictures in her books. Ah well, maybe next year.

Saturday, May 16, 2009

Tired, cranky, aggitated

That's how I feel lately. I'm annoyed with pretty much everyone and everything. I think it stems from 1st trimester tiredness and a 2yo who won't sleep. I swear if I could even get a decent nap I'd be a new person.

One of the things that hacked me off this week was our visit to the DS Center. I was left with instructions to give Goldie cow's milk, let her cry it out, and a prescription for Miralax. Oh yeah, I almost forgot the flushot. Because a hurriedly manufactured vaccine has to be soo much better for her immune system than breastmilk! Not. I got the kids with DS have weak immune systems lecture. Yeah, well noone told Goldie that and I really don't want her to know because she hasn't been sick in 4 months and has only had antibiotics twice. And I didn't ask for advice on weaning or nutrition so I don't know why he felt compelled to suggest cow's milk. I did ask for information on how Down syndrome could be affecting Goldie's sleep. After the CIO speech I explained that it would be cruel to let a child CIO ever without first looking for a medical reason for nightwaking! He went as far as to ask why I made an appointment with an ENT. The reason should have been obvious, to have her adenoids looked at and talk about sleep apnea. The bottom line is he just doesn't have enough knowledge or experience when it comes to Down syndrome. The suggestions he gave me I could have gotten from any general practice pediatrician.

If you've made it this far, thanks for reading my rant. The other think that struck me when we when we walked into the reception area were the bulletin boards plastered with research study opportunities for Autism. I think this is great, Autism affects a lot of kids. But, there was nothing for DS. (The NIH just doubled the amount of research funding going to our Children's Hospital. I asked and No none of it will go to the DS center) Then, when I suggested checking for vitamin or mineral deficiencies when writing up Goldie's bloodwork I got a big no. "There's no reason to do that" I left with the overall impression that because Goldie has DS I'm supposed to accept its effects on her and not try to find other causes or solutions. Well, that's not my style. So I've been looking for my own answers. I've found a lot of good info on sleep that I'll post about later.