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

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
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


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. :)