Battling the Demons

Most days I am completely fine with Down syndrome and Rachel. Other days, like ones recently, Down syndrome gets to me. I have a hard time knowing what is typical toddler behavior and what may be a "special needs" issue we need to tackle. When Rachel was in the hospital a couple weeks ago, she didn't want to eat anything. All she wanted was her milk and that was fine by me. I could tell she wasn't feeling well. Who wants to eat when they are sick? When we came home, things seemed like they were improving. She was starting to eat some foods again. Then this weekend she just really decided she doesn't have much interest in solid foods at all anymore. She will eat cheerios and some goldfish crackers, but getting her to eat anything else is just frustrating. She'll pick up a piece of whatever it is and throw it off the tray or she'll put it in her mouth on her tongue and just let it fall out. She may even chew a little bit and spit it out.

I don't understand. She's never had a sensory issue before with food so I try not to let my mind go there but having a child with Down syndrome makes you automatically jump to "what's next on the list of things to work on." I try to let my rational mind take over - this could be completely normal. She is teething. She is still getting over being sick and coughing up stuff from her lungs. But the other side of my mind is freaking out, jumping up and down, screaming "OMG, sensory issues! Call the OT, call a food clinic, call the nutritionist! Send help! SOS!" The fact that she now weighs as much as she did at her 12 month check up in September makes me scared too. Those NICU days of counting grams never will leave me I'm afraid. These issues (of mine) are always going to be there I think. I try hard to overcome them but it's so hard sometimes. I just hope Rachel gets through this phase and starts being my munching champ again. Making food just to pick it up off the floor meal after meal can make you go a little crazy.

Look Ma, No Hands!

Back Home!

By Saturday afternoon, I think the staff at the hospital could tell we were done being there. The resident on duty came in and said she would get the paperwork rolling. By 2:30 p.m. we were back at home where we belong! Rachel was super happy to be able to get on the ground and crawl and roll around on the carpet. She also missed her toys and was super happy to see her doggies too. Daddy gave her a post-hospital bath which was badly needed. Check out our little Ed Grimly.

Too bad this morning Daddy had to leave to go back to Huntsville. Tomorrow, Rachel and I will travel to the pediatrician to make sure she is still getting better. She still sounds pretty junky. I am hoping her oxygen stats will be good and that her lungs will sound better. Going back to the hospital would not be welcomed at all!

Trip to the ER and in the Hospital

So folks, there is good reason I've been MIA from this blog.

Back story - Rachel and I have been stuffy with the same nasal congestion since the 23rd of January. Starting on the 4th Rachel started coughing. I thought "uh oh, here we go." That Sunday she began having a fever. I brought her into the Pediatrician the next day and they diagnosed her with double ear infections and told me to use the nebulizer with albuteral ever 4-6 hours. That night her fever went up to 103.2 and she projectile vomited all. over. me. ...yeah. She did manage to sleep Ok but coughed through out the night. The next day she still had a slight fever and when I tried to put her to sleep that night she couldn't stop coughing. I could hear the mucus in her throat like she was drowning. I went up and tried to have her sleep on my chest sitting up a bit but it didn't help at all. What I heard was not good so I packed her up and went to the ER.

At the ER she was listened to by the doc and had x-rays taken. It was determined that she had pneumonia and that a different antibiotic would be used and a nebulizer treatment would be done at the hospital. The doctor said we could go home but I told him I didn't like the sound of her breathing and that I wasn't comfortable going home. (This comment from me gave me deja vu of Rachel's birth - always trust your instincts moms!) He said he had no issues with me staying the night at the ER. They hooked Rachel up to the pulse-ox monitor. She was sat-ing below 88 (out of 100). The doctor then decided he wasn't comfortable with that and booked us a room.

We finally got to our room at 2AM, the nurse then had to ask us an hour worth of questions. The only good question that was asked was "did they test her for RSV?" Nope. They did not. She did the test on Rachel, which involves sticking a tube down her nose to suck out snot, and about 2 hours later we found out we were dealing with RSV too. I called Stephen to let him know what was going on and his work allowed him to drive home Wednesday to help out. Thank God because I wouldn't be doing well without him. We've been able to switch nights with Rachel so we can get some good sleep.

Rachel is still in the hospital. It seems as though the worst has passed though. She needs oxygen at night while she sleeps and during her naps but the rest of the time she's her happy self. It's now just a waiting game for the gunk to clear from her lungs so she can breath better and get more oxygen into her lungs. Let's hope tonight goes terrific so she can come home. Living at the hospital stinks.

Introducing...

our newest family member!

I had my 12 week ultrasound today. I am so happy with my OB-GYN practice because they allow their techs to tell you about the baby and everything that they are doing. It certainly makes you more comfortable. I am 12 weeks, 1 day along but am measuring 12 weeks, 6 days. The nuchal fold measurement was about 1.8 so well within normal. The baby also had it's nasal bone and, from what she could tell, all the parts accounted for and developing properly. I've only gain 1/2 of a pound as well. I have Rachel to thank for that. She keeps me moving! This little bean is a mover like it's sister. Whether or not it's are a boy or a girl that will be chasing Rachel around, we don't know yet. We have another 6 weeks until that little secret is reveled. Until then, I'll be keeping busy with Rachel and being thankful that so far this pregnancy is heading down the right direction. Yay!

Mischievous

Don't let this sweet face fool you.

 This girl is capable of getting in to some trouble.

Today she...

dug out dirt from the plants in the house,

crawled under the bed and got stuck,

threw a number of items through the gate and the top of the stairs so they would tumble down,

got in to the laundry hamper and put my clothes in to the tub,

and ate a barrette. I think. I can't find it but I'm pretty sure Rachel thought it was tasty.

Watch out counter tops everywhere!

Summer Fashion Show

I took advantage of the warm weather yesterday to try on Rachel some of her spring/summer wardrobe. I can't wait to see those chubby legs and arms again!

What is this?

Oh, it's a grapefruit!

I get it now!

cute butt!

Ready to stand any day now!

Just Keep The Good News Coming

After our our time with Stephen in Huntsville, Rachel and I came home to a message from her kidney doctor on our answering machine. (Yes, he personally calls us!!) The second blood work she had done came back better. Her hemoglobin, hematocrits, and mean cell volume all came down. He didn't say if they were normal but he did say it looked better. We need to have her blood work done again in 3 months to make sure that everything is still going down in to normal range. Yay!

Rachel has been doing really well these last couple weeks. Well, except for sleeping - or lack of. She is working on cruising and standing on her own like crazy so that could be why she doesn't want to sleep. She is still working on teeth. Her top two and one on the top left side are coming in and taking their sweet time. I also think she has a couple more on the bottom coming in too but they aren't quite showing yet. I can't wait until she gets some molars and can chew heartier foods! We have a meeting with her ENT on Tuesday. I wanted to make sure we saw him one last time before we move. I'd like him to take a quick look at her tonsils and adenoids just to see how they are doing and to talk about her sleep apnea. I want to make the rounds with all her docs before we move and I think he is the last one.

In other baby news, my 12 week ultrasound is next Friday and I'm getting pretty excited about it. Initially, I was kind of "eh" about this pregnancy with everything we've had going on. But now that things have settled somewhat, I find myself thinking about this baby and hoping everything is alright. I know I can handle whatever life throws at me but right now I could use the break from things being eventful. Dear Baby F...please be really boring while you are cooking. Thank you, mama.

First Haircut!

 While visiting Stephen in Huntsville, it was decided Rachel was in need of her first haircut. Mostly it was Stephen who decided. He has issues with long hair and refers to any boy with hair longer than his as a "hippy." Anywho, we found a cool place called Spoiled Rockin Kids Salon. They had a first haircut package. You receive a bravery certificate, before and after pics and a locket of hair. The place was awesome! If I was a young girl I would have all my birthday parties there. They even have a catwalk! Rachel was put into a pink car and strapped in. She was all in awe about what was around her and didn't even notice the woman cutting her hair until she started on her bangs. As soon as the hair hit her face, Rachel turned and saw the lady. Rachel did not cry or get hysterical. She just wanted to be picked up! The rest of the haircut turned into us trying to keep her attention so she didn't mob the lady for hugs. It was a great experience and I really hope she is this good with all her other haircuts. We love you Rachel girl!

 

Cross It Off The List

Last week we paid a visit to Rachel's GI Doc. I voiced my concerns on her large amounts of poo and the fact that she has been around 18 pounds since September. I asked about getting tested for Celiac and he agreed that it was worth looking in to. He not only had blood taken for the Celiac test, he also sent some off to see if Rachel was a carrier of two certain genes. If she didn't have the genes, she couldn't develop Celiac. If she had the genes, Celiac was still a possibility even if the Celiac test came back negative. Apparently it's hard to get a reliable results with kids under age two.

The nurse called today and said her Celiac test was negative and she did not carry either of the genes in question. Whew! I am so happy to move past that issue. So Rachel's growth plateau is not due to Celiac or a thyroid issue (that was tested back in September).

We met with her nutritionist today as well just to go over what I was feeding her and making sure I was giving her enough to eat. It was recommended to put butter on everything and to add Carnation instant breakfast to her milk or yogurt to help her sneak some more calories in. I think I can manage that one. :)

Other than that, I had my Baby #2 work up done. Had a bunch of paperwork to fill out, blood to draw and a cup to pee in. I also got to hear the heartbeat with the doppler. Such a sweet sound. The little bean is doing good so far. Next big day will be the 12 week ultrasound on the 4th. I had a hard time deciding to do it. I declined with Rachel but I think if we are faced with "bad" news with this baby early on, I will have an easier time moving forward than I would have with Rachel. Because we now know what "bad" news looks like. My smiley, happy girl.

5 AM

The past two weeks have been a sleeping nightmare. Rachel will not sleep past 5am and she will not nap more than 45 minutes. I have tried moving her bedtime up to 7pm. It's not making a difference. She wakes up at 5am and yells, cries and whines until I get her. I have tried waiting until 6:30am and she just will not go back to sleep. She cries and yells for an hour and a half. I have tried making her nap time consistent. After 45 minutes she is awake and yelling and will not go back to sleep. The only way she will take a nap is for me to drive her around for 2 hours in the car. Not good for the environment, me or our wallet. And it's also not good for my brain. I am so tired. I need the nap time during the day if she is going to get up at 5am but it isn't happening. I am so tired.

Dueling Linkin' Rings

Oh, the fun we have at our Ds play group!

Bun in the Oven

Yep, it's true...we're expecting our next bundle of joy sometime around August 18th. We hope. We'd really like to keep this one in longer than 30 weeks. You hear that little bean? We already have one trouble maker in this family!

yeah, i'm talking about you, rachel girl!

House for Sale

Just wanted to put this out there. If you or someone you know is looking to move to the Greensboro/Winston-Salem/High Point area of NC, please pass along the info on our house. Thank you!

 Listed on forsalebyowner.com

This 3 year old home is located in a quiet cul-de-sac and sits backed up to a beautiful wooded area. Part of the woods is included in the property line beyond the fence. It is a 2 story, 3 bedroom, 2.5 bathroom home is 1824 square feet. It is move in ready and well care for. A great family neighborhood!

Some of the best features include:

***A large Kitchen with a walk-in pantry, tall cabinets, island, and breakfast area. All Appliances are staying!

***Formal Dining Room with a beautiful picture window facing wooded back yard

***A generously sized Master Bedroom with a large Master Bathroom that includes shower stall, garden tub and big walk in closet.

***Newly installed 4 foot dog-eared fence protected with water sealant

***A loft room at the top of the stairs

Other bonuses include Terminix termite protection and covered HOA dues until April. ADT security system. Garage door opener with two remotes. Low flow toilets in every bathroom, fans/ceiling lights in every bedroom and the living room and 9 foot ceilings throughout the downstairs.


****can send more pics if needed!

Hard Day.

Taken a couple days ago- pre-sickness

 Our girl is sick again. I knew something was up with the way she had been acting. I took her to the pediatrician last week and she had a slight temp but nothing else they could see. Well, she is now congested and coughing. She coughs a lot more at night and that makes for horrible sleep for her. She also refused to nap today and was an all-around crab fest. I had to take a mommy time out and put her in her crib with some toys for 20 minutes so I could take a shower and relax. Entertaining a sick child who doesn't want to nap is exhausting. It's times like these that I miss Stephen the most. If he was here we would tag team her and we would both get some "me" time and recharge our batteries. I know I'm not the best mom when I'm doing it alone. Also, she has been not napping great for over a month now. She will fall asleep and then wake up 30-45 minutes later screaming her head off and arching backwards. Nothing but a bottle calms her. Which makes me think reflux. But, if it's reflux, wouldn't she be doing the same thing at night? Also, I had her fall asleep on my chest while sitting in a chair and she did the same thing about 15 minutes into falling asleep. Again, if she is on an incline, wouldn't that keep her reflux under control? I mean, the girl is on 2 adult doses of Prevacid a day and a thickener for her milk, certainly her reflux has to be under control?? What is next?! Gar. Anyway, a visit to her GI doctor is scheduled this Wednesday. Let's hope she's well enough to get to it. I don't want to miss this appointment. My sanity and her nap time depends on it.

GImmie.

Rachel has found out that her motion for a wave can now be used as "gimmie." As in, " I see you have my slinky... Gimmie!" Or "Oh look, a camera...Gimmie!"

New Year, New Thoughts

Wow, what a whirl-wind end of the year it has been. I don't think Christmas has ever been so jam-packed with stuff to do. The weeks before Christmas were spent getting the house together for it to be sold. There were some things that I wouldn't be able to do without Stephen. We spent Christmas day here (with 6 inches of snow!) and then drove up to NY the next day to spend the week with Stephen's family. Rachel got an ear infection before we left. Thank God, I took her to the pediatrician a couple days before we left and we were able to get meds to help her out. That would have made the trip even more miserable than it was. Poor girl was not happy in the car. She used to be OK for 5 hour spurts but not any more. She cried like we were torturing her. I think she has also reached the point where it's harder for her to sleep someplace besides her own crib. She did not want to sleep past 4:30/5 AM most nights and that was hard on us. We ended up driving straight through from NY to NC on Thursday night just to get home. Rachel slept in the car from 7 PM until we got back around 11:30 and when I put her in her crib, she woke up, looked around and fell right back to sleep. She slept in until 7 AM and has done so since then. Such a home-body. Thank the lord we have no more long trips in sight for months.

Stephen left Sunday to start his new job down in Huntsville. Our last weekend together was spent getting his stuff together. He took our dogs with him too, to keep him company. It is very quiet here now. I never thought I would miss his noise but I really do. I have the carpet cleaners coming on Wednesday and Molly Maid coming on Friday. After that, I take pics of the home and hopefully have it ready to go on the market. I'm sure a lot of people go through this when the sell a home but I worry about this house. Will the next owner like the pear tree I planted in the back yard? Will they take down our fans and replace them? Will they paint over the green in Rachel's room. Thinking about Rachel being someplace besides "her room" breaks my heart. I think I'll have to take the can of green paint with us when it's time to go. Her next room will need to be that green again. I know I've said it before but I will miss it here.

People ask me all the time, "How is Rachel doing?" Actually, she is doing great. I went through some old posts and I have realized that I'm not reporting every little thing she does anymore. Probably because the news of Down syndrome has kind of worn off. I don't feel the need to tell the world each and every therapy session because they are just part of our lives now. Kind of like doing the laundry. Everyone knows that I do the laundry, so why do I need to talk about it all the time? But she is moving along. She wants to walk so badly but doesn't understand how to get her little legs moving. She pulls to stand and if she is near another platform, she'll try and transfer over to it. She has been getting better but she tends to forget to move her legs as she throws her body over. She also almost climbed up from a toy to her bench. She got her little leg up on top of the toy and then I think she got unsure of herself and lowered herself back down. I was so excited. I thought for sure she was going to do it. Rachel is learning much faster now too. She received a couple new toys for Christmas and she already mastered how to use them. I underestimate her sometimes and I know she does these things just to put me back in my place.

most of my pictures look like this now - she crawls after the camera

notice the toy explosion

Let it Snow, Let it Snow, Let it Snow!

Merry Christmas from the Little Monkey and Me!

Kidneys

As I posted before, Rachel went in to have her kidney follow up last Thursday. It wasn't the visit we hoped for. When Rachel was born, or shortly after, they determined that she had one kidney larger than the other. All of our past visits were to make sure that the kidneys were evening out and returning to "normal." The last visit we had, 6 months ago, we were told there was progress and that her blood work was great. Which lead me to believe that this current follow up would be the last one. Unfortunately, the kidney doc showed us her ultrasound. Her left kidney was doing pretty good. It was growing like she was growing and only had a little big of "light" areas. Light areas mean that there is dense tissue and that keeps the kidney from growing and performing like it should. The right kidney, however, seemed to have not grown at all since 6 months ago and is now the smaller kidney. It was also pretty light which indicated a lot of dense tissue. Not good for a kidney. The doctor explained to us that we just need to keep an eye on them and to watch out for any signs that the kidneys aren't functioning the way they should. He said it's pretty possible that the left kidney will grow larger than normal to make up for the less functioning right kidney.

He also had some blood work done again. We finally got the call about that on Monday. He wants us to get another work up in 2 months. I am not sure why. Even thought he said her blood work concerning her kidneys was fine, he must have saw something that made him worry about something else even though he told me not to get worked up. Her hemoglobin, hematocrit and mean cell volume were higher than they should be. Does anyone have any ideas of what this could indicate? Her lymphocytes were low also but he really didn't seem bothered by that. I didn't think to ask him what his thoughts were at the time he was talking to me. I don't know why. I called him back today and left a message. Hopefully I will hear back from him tomorrow. I hope that this doesn't turn out to be anything big. I just want our girl to be healthy.