Brakes & Breaks

As a mother of four, it isn't often that I get to take a break longer than nap time.  Until, life puts the brakes on. I had surgery 6 weeks ago. It was scheduled and planned well in advance. Still, nothing really prepares you for not being able to care for your family. I always try to see the positive in everything, but it was really eluding me in the weeks and days leading up to the surgery. Of course, in the weeks since then it has only become more obvious.  My life was out of balance.

It is very easy for me to live in Down syndrome World. It's so simple to get there. All I have to do is take a seat at the station (between the family room and the kitchen) and wait for DSL express to pick me up.  Then, I simply choose from over 200 pre-programmed stops  (favorites, bookmarks).  Oh, I better not forget to pick up the mail (Yahoo groups) while I'm out! It stacks up fast.

Now seriously, I'm a research junkie. I do believe that has been a good thing for Goldie. There is a steep learning curve when your child is born with any kind of special needs. However, I think I've covered enough of that curve to warrant taking a break for a while. I wish I could say I came to this conclusion on my own, but I had some help from a too slow to use laptop. Not to mention being in too much pain to even think about sitting at my desk.

With the help of my Mom and my husband we pulled through. I'm even caught up on some of the movies I missed in the last 3 years along with having read all the books in the Twilight saga. Reading fiction was something I hadn't done since I was pregnant with Goldie. I also used the time to write  homeschool goals and objectives for  my two older girls, along with making some curriculum choices. Now that I've put the extra chromosome back in line I can keep moving forward with life, and this blog.

Where can I get an accurate swallow study done?

When I wrote that last post I was feeling the dread of dealing with the stomach flu over Easter. Well, that went away around 2 am when Goldie drank a cup of juice and kept it down. My husband decided that would be a good time to give me the whole story about what preceded the puking.  He had Goldie with him, visiting the neighbor. She had a little glass and was playing with their water cooler. Filling the glass, trying to drink from it and spilling it all over the place. For most 3 year olds this would be good, clean fun. (Unlike yesterday when she came in covered in tractor grease...) The only problem is that Goldie can't drink thin liquids without choking. Which is what happened. She choked and coughed so hard that she threw up her dinner. It took over an hour to empty her stomach because of her diastasis recti.

WARNING: This next part talks about vomit and you may think its gross.


This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.

My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.

I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments.  Any advice on how to get this done right?

And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing,  despite all the medical loose ends waiting to be tied up.

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?

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!

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???

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.

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.

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.

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!

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.