Sunday, July 29, 2012

Lily's Modified 3rd Birthday

In our PJ's Saturday morning.
Well, Lily's modified birthday went okay. I'm glad we were able to get together with family. But after a pee-pee accident (on Lily's part) and a falling down and breaking things accident (on my part), both at Joe's sister's (Jess) house, I am glad it is over. And if we get together with Lily's little friends this week, it will be somewhere in public where we are not likely to ruin people's things. :-)

Anyway, here are some pictures. Enjoy.

We had our first cake of the day in the morning with Grandma and Grandpa Jeff.

A tradition in Grandpa Jeff's family. :-)

Practicing ballet in one of her new outfits from Aunt Jaci and Uncle Daniel. This is at Jess' apartment, pre-disasters. :-)

Ballerina feet!
Outfit change! Grammy is holding baby Daniel in the background.

Opening presents.
No doctor's visits for the first time in a long time this week. I think I'm going to work on getting Lily started again with her homeschool pre-k curriculum. I have a few minor phone calls to make for Daniel and we are getting new carpet installed this week due to the leak we had on Friday. I'm sure we'll stay busy!

Friday, July 27, 2012

Good News and Bad News

So some of you may have already heard the bad news: the drainage pipe in our A/C broke and leaked gross water all over the kids' bedrooms. This afternoon. So we had to cancel Lily's party tomorrow. :-( We are still going to eat cake with family and try to get together with her little friends later in the week, but my vision of her perfect birthday celebration is all gone, sadly. This is really motivating me to save my pennies for a venue party for her next year, so even if our house is a shambles the show can still go on.

The good news: All of Daniel's appointments this week have gone wonderfully!

On Thursday morning, we met with our ECI service coordinator and an occupational therapist to evaluate Daniel's capabilities and make an IFSP (individualize family service plan). He did very well. He was able to lift his head up while he was on his belly and track a toy from side to side. He also showed off by rolling tummy to back and grasping at a toy. I was hoping he'd give the therapist a big old smile but no such luck. :-) Currently he is evaluated at a 1 month level (right on target) so that is good news. He is doing a few advanced things but I don't think they really evaluate for advanced children as they are supposed to be doing early intervention. I do not expect him to stay on time or advanced at all, but it was nice to hear, even if this is the only time I get to hear it.

So for now the plan is to meet with the OT (occupational therapist) once every two weeks and add more therapy sessions as needed. I want to get him started with physical therapy ASAP and possibly add speech therapy by six months of age.

We did talk to the OT about something that made me a little sad. Because babies and children with Down Syndrome can have issues with hip abduction (altered movement patterns can cause issues when learning to crawl or walk), we probably will be discontinuing our use of cloth diapers with Daniel. As funny as it might sound to some of you, this is the first time something related to Daniel's DS diagnosis has made me upset for a somewhat superficial reason ;-). Because the cloth diapers are thicker and are bulkier between his legs, and he wears a diaper 24/7, they could possibly make these hip problems worse or make them more likely. So we're using disposables with him for the foreseeable future. I'm trying to look on the bright side and appreciate how much more convenient disposables are. Even if they aren't as cute and are more expensive. :-)

FYI, for the same reason we are unable to use baby carriers which cause him to spread his legs too far apart, as well as exersaucers. Family members should be careful not to hold him on their hips as well after he starts to get head stability (I'm going to have a hard time with this one, as it is so natural as a mom). We want to avoid "froggy legs" and "W sitting."

Later Thursday afternoon we went to Daniel's follow-up cardiologist appointment. We received good news there as well. First of all, he weighed in at 10lbs 7oz, which was a 7 oz gain since last Friday! He grows out of the infant insert in his car seat at 11 lbs and grows into size 2 diapers at 12 lbs. I feel like he is growing way too fast.

Next, the nurses did an ECG on him, and he got to experience sucking on a pacifier for the first time. He was extremely overtired and was screaming bloody murder when they were sticking the little electrode thingies (not sure of the technical term) on him, so they gave us a pacifier with sugar water on it to calm him. He sure enjoyed that treat! I used to be a strictly "anti paci" person, but your kid's needs will trump your preferences as a parent every time. We're still keeping it only for emergencies like this, but I am definitely a pacifier appreciating person at this point. :-)

This is totally an non-invasive procedure, but it was hard as a mom seeing wires taped on my baby like this.
All I know about the results of this test was that they were good. Can't give details because I didn't understand 99% of what the nurses said, but his results were good. That's all I care about.

After that we went for an echocardiogram with the actual pediatric cardiologist. Long story short: Daniel had 3 holes in his heart when he was born: a PDA, VSD, and ASD (feel free to google for more info). The PDA closed, the VSD is almost closed, and the ASD (which was 4mm wide) has not changed at all. This isn't necessarily very bad; it is possible for Daniel to live with this defect for his whole life with no issues. There is a possibility it will get smaller or close, and this is what we are hoping for.

There is also a possibility that it will not close and will cause problems. If this happens, the defect can be repaired using a catheter-based procedure when he is 3-5 years old. This isn't even technically considered surgery. So it is unlikely we will ever be facing open heart surgery with our little man. This is great news!!!! And very very lucky for a little one with DS. We are following up again in six months to see if the ASD has gotten smaller at all, and will be checking every six months for quite some time to come.

This morning I had an appointment with my ENT (ear nose and throat doc) and was able to ask him a few questions about preventing ear infections with Daniel. Babies and children with DS are especially prone to ear infections and fluid in the middle ear. This can cause hearing loss, which in turn makes it harder for them to learn to speak and learn in general. We want to prevent this as much as possible. His advice was to continue breastfeeding and keep him away from other children as much as possible so he doesn't get sick. This is easier said than done when one has a busy older sister. :-) But we are committed to keeping Daniel home until he enters preschool at age three. Hopefully that will give him enough of a good start before he encounters all of those kid germs at school!

I also wanted to note that we did see Daniel's pediatrician last Friday to ask about his eyes. She confirmed that he does have nystagmus, but that it is on the mild side. She wants to wait until he is 3-4 months old to give his eye muscles a chance to develop a bit more. If he is still having issues then, he will be referred to a pediatric ophthalmologist. His heterochromia is benign and is just one more interesting part of him.

I hope my next post on the kids can focus a little less on medical stuff. I'm trying to keep everyone updated on the latest, but I hope you don't get the impression that our lives are all doctor's appointments and worries. We get lots of smiles and cuddles too. :-)

Until next time! Please continue to pray for good health for Daniel. Thank you.

Tuesday, July 17, 2012

The Latest

Yesterday I took Daniel to get weighed at the lactation center affiliated with the hospital Daniel was born at. He weighs 9lbs 10.7 oz! So that's another 12+ oz gain from the last time he was weighed. We are so grateful he is gaining so well and is able to nurse efficiently.
The lady from ECI came today. This is the person who will be coordinating all of Daniel's therapies. Her name is Vicki and she was very nice. Today was just a paperwork visit, so I signed my name a whole bunch of times, mainly. Sadly, just because of Daniel's DS diagnosis, he automatically "failed" hearing, vision, and nutritional screenings without actually being screened.

Luckily we are pretty confident things are going okay with his hearing (passed newborn hearing screen) and nutrition (obviously since he's gaining so well).

I have a few concerns about his vision, but he looks at lights and black and white pictures, and he can make eye contact, so I know he can see something. I'm just not sure how well he is seeing or how far he can see. I also see some indications that he may have nystagmus. This is associated with Down syndrome and does not necessarily mean anything horrible, but I'm worried. I have a feeling we'll be seeing a pediatric opthamologist sooner rather than later (and in fact I am calling his pediatrician tomorrow about this). I found out today that babies this young CAN wear glasses and they do make them that small. So we'll see what happens. This is hard for me to write about since I'm pretty worried for his eyes, but I'm trying to be honest here!

Speaking of his eyes, he also seems to have heterochromia iridium. My friend Karen was kind enough to take this detailed picture of his eyes so other people can see it. His left eye is about 3/4 brown and 1/4 blue. His right eye is blue. This does not run in either of our families to my knowledge, so I guess it is just random. Daniel is a very genetically diverse baby. :-) From what I've read this is probably (hopefully) not a medical issue for him, but it will be one more thing for an opthamologist to check out.

As far as the rest of us go, we are doing well! My mom and I took Lily to get her 3 year old pictures taken today at a portrait studio. I enjoy this day every year. When I was growing up my Grandmother (Sylvelyn, for those of you who knew her) took me to buy a dress and get my picture taken every year until we moved to Pakistan. I am loving carrying on that tradition with my Mom and Lily, and hopefully Daniel next year too. Some of you will be receiving pictures in the mail! They turned out really awesome and I am so excited to get them sent out.

We are also gearing up for Lily's birthday party next weekend (the 28th). She very much enjoyed the Brave movie, so I think the party theme will involve Merida and her friends somehow. She has already had a few presents arrive in the mail and she is waiting with bated breath to open them on her birthday. We are allowing her to open a few on her actual birthday, the 25th.
"Take my picture Mommy!"

The latest on me (Elicia) is that I have joined Weight Watchers Online. I got within about 10 lbs of my goal weight after Lily was born and couldn't really get much lower than that, so I feel like I need help this time around. They have a program for nursing mothers, so I can make sure I am getting enough calories to produce enough milk for Daniel, while still losing weight. My goal weight is 135 lbs. The day we got married I weighed about 125 (at 5'7" that is actually a little low for me), so I think 135 is a reasonable goal for me right now as a mommy. No, I'm not going to tell you what I weigh currently!!!
Daniel squinting his eyes at the sun while Mommy and Kirby get some exercise.
We do have a few prayer requests for those of you who would be willing to pray for us:

- For Daniel's eyes and eyesight.

- We have an appointment with a pediatric cardiologist next Thursday to check on Daniel's heart. We're asking for specific prayers that all of the small holes in his heart have closed completely. I'm not sure if we'll actually be having an echocardiogram that day or not, but I'll keep you updated.

- For Daniel's actual first ECI evaluation next week. They will be testing him to see if he is developing appropriately for his age. He seems to be doing okay so far, but I'm still nervous. Parents never want to hear that their children are delayed in any way, though I know with him this is inevitable eventually. I need prayers for some emotional fortitude for these visits!

I will probably try to update again by early next week. I hope you all have a wonderful rest of the week and weekend!

Snuggling up for a nap (in his crib!) with a blankie from Uncle Justin. :-)

Tuesday, July 10, 2012

Daniel is One Month Old

Daniel turned one month old today! To celebrate, I took some pictures. Lily and I also baked some cupcakes.

One month today!

He's been holding his head up for a maximum of about 15 seconds! Doing great. He also attempts to roll over every time we place him on his tummy, so we're certain he is doing it on purpose.
Today was also the first day I cooked a real dinner since Daniel was born! It took about a month after Lily was born for me to cook dinner as well. I guess I know what to expect if we have more kids! I made chicken and dumpling soup.

Daniel's "intake and paperwork" appointment with ECI is exactly a week from today. He will be 6 weeks old when he starts occupational therapy, and we will develop an IFSP (Individualized Family Service Plan...I feel like learning all this new lingo is a full time job) at that time. The organization we're working with slowly adds the therapies in one at a time, so he should be doing all three-- speech, occupational, and physical --by the time he is three months old. I've been told speech therapy isn't really needed at this point since he is feeding so well. So I'm hoping we can add that one last. Since he has Down Syndrome I was told he automatically qualifies for all the therapies we want to try for him. And we want them all, so that's great.

I attempted to take one of those sibling pictures where the baby is on the older child's tummy and they're both gazing soulfully to the side into the camera (you can find an example of what that is supposed to look like if you scroll down a bit here). This is what happened when I made my very unskilled attempt. I am at least grateful he is holding his head up so well!!!
Finally, I had a question for family members: Does anyone know if we have a family history of anyone having different colored eyes (technical name is heterochromia)? I am pretty sure Daniel has one blue eye and one brown or possibly hazel eye. You can see it best in the second picture I posted. I have tried to take him out into full sunlight so I can tell for sure, but he doesn't like it and closes his eyes. There are some medical conditions associated with this so I'm hoping it is either inherited or just random.

Friday, July 6, 2012

Our Week So Far...

We had a great 4th of July! I hope you guys did too. Lily has been doing this cute thing lately where every time we drive somewhere or take a walk, we take turns finding American flags. I thought it was cute that this stage coincided with the birthday of our nation!

On Wednesday we mainly just relaxed until after dinnertime, when we drove to my mom's house to hang out and watch the fireworks. Here's some pictures from the evening:

Lily in her patriotic wear. Dress is a hand-me-down from my cousin Kelsie, and the barrette is from Joe's cousin Leah. She chose to add the headband herself. :-)

Coloring with Grandma.

"Take a picture of my picture!"

Talking to his Grandma

I had fun playing with the fireworks setting on my camera.

Joe and I took turns staying inside with a white noise machine with Daniel while the fireworks were going on. Lily really enjoyed herself!

Yesterday seemed to pass by in a blur. I had vague plans to take Lily to storytime at the library, but we ended up spending most of the time in bed, me nursing Daniel, and Lily watching shows on the DVD player. I think we were both recovering from the late night before!

Today I took Lily to the dentist for a checkup and cleaning (her teeth are still perfect!) and I got to talk to the dentist about Daniel a little bit. Apparently he is more likely than typical children to suffer from periodontal disease and less likely to suffer tooth decay, so we have to pay close attention to his gums. I bring him back when he is 6 months old for his first checkup.

After that I took Daniel to his pediatrician for a weight check. After a little snafu where I chewed the receptionist out for wanting to charge me a copay to WEIGH HIM (the office manager "waived the copay" for today...I am going to be taking him to the lactation center at the hospital to get weighed for free from now on and just call his weight in to the doctor), he finally got weighed. He gained 12 ounces this week and weighs just under 9 lbs!!! SO proud of him (okay, I'm proud of me too). And he's grown almost two inches since he was born. :-)

Stimulating Daniel's brain while Lily and I got ready this morning
When we got home I called the organization that will hopefully be providing Daniel's therapies (Occupational, Physical, and Speech therapy is what we want for him) as they were supposed to call me back by today and I hadn't heard anything. Apparently now the wait to hear back is 4-5 days instead of the 2-3 I was originally told. So I guess I'll be calling again first thing Monday morning.

This weekend we are planning on finally taking Lily to see the Brave movie. I am so looking forward to doing this with her!! It is supposed to be a really good mother/daughter film. Grammy and Papa (Joe's parents) have generously offered to watch Daniel while we go. I didn't really want to leave Daniel before he was about 4 weeks old, which he will be on Sunday. I can't believe how quickly the time is going. I feel like he was just born yesterday.

Hopefully I'll have another update sometime early next week. Thanks for reading.

Tuesday, July 3, 2012

First Post

Hello everyone! With the birth of Daniel and the amount of time I've spend on the phone updating people about us, I thought I'd start a blog again to try to save some time. I tried it out when Lily was born and didn't get too far, but I'm going to try again. Will try to make updates about Daniel and Lily (and Joe and I too, sometimes) on a regular basis.

What's going on recently:

- We called ECI (Early Childhood Intervention)  yesterday to get started on getting therapy for Daniel. They should call us by the end of the week to schedule an intake appointment.

- I did some research about Special Needs Trusts. People have been asking me about opening savings accounts or 529 accounts for Daniel. I have been advised that this is not a good idea because any assets in Daniel's name could keep him from getting benefits from the government should he need them later in life. A way "around" this (its complicated) is the special needs trust. You can read more about it here: . Not sure when we will start things rolling to do this, but we'll keep you informed.

- Daniel has his follow up cardiologist appointment late in the month. When he was born he had an electrocardiogram and the doctor found three small holes in his heart. Two of them are small enough the doctor was pretty certain they would close on their own. The third is borderline. It is 4mm and between the two upper chambers. I think this defect is called an ASD but I am still learning the lingo. Anyway, it is about 50/50 whether this one will close on its own. If it doesn't he can get surgery for it later in his life.

- Nursing is going ok. As of Friday Daniel was up to 8lbs2oz from a birth weight of 7lbs9oz. The pediatrician says that babies with DS do gain weight a little slower. He also had a bad cold last week and was not eating well, so he is catching up a bit. He is a very sleepy baby and honestly nursing him is pretty frustrating, but I am going to keep going as long as possible because I know it is very good for him. He has a good latch, he is just very hard to wake up. Imagine forcing someone to wake up every two hours during the day! It gets old.

- Lily is doing okay. She loves her little brother so very much, but she is also stressed. She has been having night terrors pretty much nightly. Luckily no potty regression. I'm thinking this is still pretty normal for a toddler with a new sibling.

- I have started contacting other moms of kids with DS in the community and it has been really just so nice to talk to women who have been where I am and who "get it."

Some good news:

- Daniel has been rolling over consistently tummy to back starting the day before he turned two weeks old. We have video of it! And we try to give him the opportunity to do this a few times a day. This is pretty huge for a baby with DS. We are trying to be quietly excited for him because we know it doesn't necessarily "mean anything," but we hope it is a good sign.

-Yesterday he started purposefully reaching for toys, but he hasn't been able to grasp them for more than a few seconds. He is figuring out his hands though!! Another hopefully good sign.

I think that is it for now. I will probably have another update by the end of the week.