Seussland

This year for Halloween we went with a theme for what everyone dressed up like. I figure there will be a time soon enough when everyone will want to really choose what they dress up as...and Tom and I will be unable to convince them otherwise. We had a really nice evening with an initial stop off at Grandma and Grandpa's house. Then onto the Leach's house to celebrate our 19th Anniversary with them. Julie and I were in grade school when we trick or treated at their house and Jane asked if anyone in our group babysat...the rest is history!

October

October has been a super busy month so far and it shows no signs of slowing down! We visited Johnson Farms Pumpkin Patch where Jack picked out everyone's pumpkins. He now likes to tell everyone he sees that his pumpkins are outside. We also went to Louisburg Cider Mill and enjoyed cider donuts and apples. Jack and Preston both enjoyed eating the apples and jumping around on the hay bales.


Kate asleep in her swing cuddling her doll.


Mallory looking super cute and super blue eyed!



Jack being watched carefully by Preston on the good form and proper way to enjoy an apple. Jack "painting" the house.


Picking out pumpkins.





For those of you that have not been informed of the goings on, Mallory's genetic tests showed a microdeletion of chromosome 10. The follow up appointment with genetics did not give us much new information but did give us the chance to discuss the implications of this chromosomal abnormality. This finding is a reason for her hearing loss, small growth pattern and her developmental delay. We are now scheduled for a full cardiac work-up (November 9) and renal ultrasound (November 9). During those appointments we will have some blood drawn to check her calcium levels and PTH (parathyroid hormone) to determine if she has any deficiencies. On December 15th we have an appointment with an immunologist. We will see what these appointments yield; most likely there will be some abnormalities found with these visits but we are going to do initial testing and determine if follow-up care is indicated.

We are working our way through the systems that have shown some abnormalities in other chromosome 10 deletion children, the severity of which is a broad spectrum. Right now it seems to be a wait and see kind of approach with her developmental delays. There will for sure be some. The literature that is available is miniscule at best and only shows a snapshot view of this disorder. We have no research that is longitudinal and therefore have an even smaller predictor for the future. Scary.

Mallory is talking lots and is moving all over...she seems to be just a bit behind Kate in her movements. She is a super happy girl and LOVES to be held and talked to. Thanks for all of the thoughts and prayers...we will keep you updated.

6 Months!

Two posts in one week! Amazing! Well we are officially at the 1/2 year mark with these pumpkins and I think have all adjusted pretty well. Went to the Pediatrician today for 6 month check-ups which included immunizations and flu shots. After a few tears the girls acted like nothing traumatic had occurred; they definitely take after their big brother who has always done amazingly well with Dr. visits and shots. Kate: 12lbs 2.8oz (<3%) 24.5inches (10%) and Mallory: 9lbs 15.8oz(<3%) 23.5inches (<3%)

Overall the appointment went well, just planning on fortifying the girls breastmilk/formula.

Here are some cute photos of Jack playing at the park, mowing the grass with Tom and overall just being cute.

The girls are getting to be so fun and interactive. On that note I have been putting them in their Johnny Jump-ups and they love to bounce around. Yesterday they each fell asleep in the jumpers, Kate in the morning and Mallory in the afternoon....they really are gorgeous, no bias here!

Pink Ears!

Well Mallory has received her pink hearing aids, and I must say they are super cute! It is amazing that at 5 1/2 months old she and Kate have such specific personalities...Kate is our tomboy of sorts, she L-O-V-E loves to be played with rough, to be thrown about elicits a huge smile and often lots of giggles. Mallory is more delicate and giggles with "softer" play...she is our princess, and as such the pink aids suit her perfectly.

The brand of hearing aids we got came with a gift for Mallory, a little otter/mouse-like stuffed animal that also has hearing aids. I hadn't thought much about these types of toys, but I do remember Cabbage Patch Kids having glasses; so why not hearing aids? I am now interested in looking for dolls that have the option to buy hearing aids...did you know that Build-a-Bear has this option? Pretty neat stuff.


Monday, September 20th was our genetics appointment for the girls, and although it was a fairly successful appointment I am disappointed to report that it has yielded about 10 additional appointments. We drew labs on Mallory and are looking to see if there is a gene mutation that is the cause of her hearing loss, the labs may take as long as a month to be completed. In the meantime she has a follow-up appointment with ophthalmology and has an appointment with Dermatology in a vascular malformations clinic to evaluate her hemangioma. Not sure I have mentioned before but she has this growth on her left shoulder that has continued to grow and is very vascular-looking. It is now the size of a ping pong ball and is very blue. The geneticist is wanting to get a closer look and make sure it is not growing into her spine and thus eventually effecting her range of motion. Sounds scary when I write it out but we are optimistic that this is nothing to worry about and it is, as our Pediatrician said, a simple hemangioma that will reabsorb on its own and leave no ill effects on Mallory.

We did not get any labs from Kate, and I think this is because there is not a chromosome/gene mutation that is thought to have caused her Microtia (is this right Molly?) The Dr. did mention that she thought Kate had some facial indications of a disorder known under an umbrella term as Ocular Aural Vertebral Spectrum Disorder. She felt that Kate has an assymetric facial composition, although slight, where her left side of her face is smaller. Her jaw, cheek bone and ear look smaller and because of this she is having her eyes checked. She will also be getting a scan of some sort (CT or MRI) of her cervical spine to see if she has any vertebral anomalies.

This is what is scheduled currently and I believe more appointments will be looked into once we get some answers from either the lab work or from radiographic studies. Wishing there was one test that gave us all of the answers.
The girls are developing on track. Kate continues to be very active and vocal, smiling all of the time. Mallory is also talking more and more and her smiles melt you whenever you are blessed to get one.

I'm trying, I promise!

Okay, so I mentioned in the last post that I would be updating monthly...well now that that promise has been squashed I thought I'd finally post the girls 4 month photos with their 5 month ones. Everyone in the Nelson household is great! Jack is super fun and talking more and more each day...some words we even understand! Kate and Mallory were not gaining enough weight and at their 4 month appointment the Doctor told me that they were needing to put on at least 1/2 ounce per day...they had put on 2 ounces in 45 days..not good. Fast forward 18 days and a weight check showed them up 9 ounces! Mallory is 9lbs 7 oz. and Kate is 10lbs 13 oz. They look great! Both are talking ALL the time now. We have ordered Mallory's permanent hearing aids, they are light pink (so cute), hopefully they will be here soon. Kate smiles all of the time, she is super laid back and literally bursts into a huge smile every time you talk to her. Mallory is a little more difficult to get smiles from, she definitely makes you work for them, but totally worth all that hard work. Genetics appointments on the 20th, stayed tuned for info with that appointment.
4 month photo, Kate loves to hold Mallory's hand.
5 Month photos were difficult because Jack really wanted to be in EVERY photo...
He decided that everyone needed a hat, even Mallory who was passed out from our photo shoot.
Jack and I had a day of fun, just the two of us. We started our outing at Blue Chip Cookies for some ice cream, Jack was not appreciative of this stop as he does not like sweets much. Who is this kid? I mean really, a kid that refuses ice cream and cookies?! After our unsuccessful sweets stop we went to Jumpin Jax for some bouncing fun...Jack had a blast and ran around constantly for 2 hours! We had a great day and hope to repeat these outings often.
And here is an older photo. The Leawood fire department showed up to our new neighborhood pool party, and as you would guess it was the hit of the party for most of the kids. Jack was on cloud nine 'driving' the "big truck" (one of his new and understandable words), until a meltdown when he was asked to get out of the driver seat.

Hope you have all had a wonderful summer, talk to you next month?

3 Months!!

I just realized I hadn't uploaded the girls three month photo with the last post. So here you go, the best of the lot...Tom literally took 30 photos trying to get both girls looking in the right direction and where neither was crying, a difficult task for sure! Doesn't Mallory look suspicious?

3 Months and 4th of July

As I am writing this post the house is quiet as all kiddos are asleep. It's a funny thing, at the end of the day I am so looking forward to bedtimes, can't hardly wait in fact. Then as the house falls quiet I find myself "missing" my kiddos...I want them awake and interacting. I find the silence peaceful and depressing at the same time; it is a strange feeling to describe. I wonder if I did enough talking to them, playing with them through that day. I know I could always do more, talk more and enjoy them more at this stage in their lives....tomorrow is a new day filled with opportunity.


I have been super bad at keeping up with this blog but am trying to post at least once a month (an attainable goal I think). Due to that there are a lot of pictures and things to catch up on, it's amazing how much can happen in a month! The month of June was filled with trips to the pool, to Deanna Rose and the Zoo! These trips were large undertakings as I took all kiddos...and to think I use to think taking one kid was a lot of work!

The girls asleep at the pool, we swam for 1 1/2 hours and they never woke up... spent the whole time in their carseats! Dream babies I tell you!

Jack and Preston playing the cow bells at Deanna Rose

Jack has become quite the Lady's Man...here he is with Ms. Ellen Lund


Here Jack is with Ms. Ella at Village Fest on the 4th of July

A snack at the Zoo with Preston (don't they look like such big boys!)
Monkey See, Monkey Do
A visit to see baby Dane! Dane is only 3 weeks here and the girls are 2 months, this is going to be one tall boy!


Jack relaxing in his lounge chair



Here is Kate with her bone-conducting hearing aid. She loves wearing it and brightens up when we put it on her. She is developing at an astonishing speed and is babbling, grinning all the time and rolling over. She has such a loving nature and loves to be kissed on and talked to all the time. Infant and Toddler services came over today to evaluate the girls and Kate is actually hitting the milestones for 4 month olds! She absolutely amazed the therapists.

Mallory did very well with the evaluation as well but is definitely a little behind her sister. She is babbling and although she has not smiled yet I know she is so close! There are some concerns with her vision but we are going to see if she progresses over the next 4-6 weeks, as she is still having her milestone age adjusted to their due date, making them just over 2 months. Mallory has a very gentle nature and loves to be held. I can't wait until she gets her hearing aids (July 20th) and can hear everything. I am convinced this will speed up her development and she will catch up with Kate.
What a beauty!

Finally we have a family photo that includes all 5 of us thanks to Jack's school continually bugging us for one for Jack's Wall at school.


Hope everyone had a wonderful and safe holiday. We will keep you updated and the next post will be from our new house!

2 and 2!

The super sassy Ms. Kate after a long "photo session"



Lots of 2s going on at our house! Jack just turned 2 in May and is really taking to being 2; super sweet to temper tantrummy in the matter of 2 minutes. He has grown a little in the past six months and is now 24lbs. which is up to the 10%! These days Jack loves to be a big helper to his sisters and is CONSTANTLY giving the girls kisses and hugs, bringing them every pacifier he can find (everyone needs six pacifiers!) and every burp cloth as well. Although we can't understand him much of the time he is really talking a lot! Mostly he is saying "Outside" over and over again. He is a super sweet little boy who is adventurous and has a definite mischievous side.
The girls had their 2 month check-up and are doing great! Kate is 7lbs 12ounces and Mallory is 7lbs 4ounces, both are less than 3%, but that is to be expected since their adjusted age is less than 1 month old. Kate got her bone conducting hearing aid on Thursday. When we put it on her and she heard vibrations on her left side the look on her face was priceless...she was enthralled! Unfortunately, she was only able to wear it for a short time, her head stability is not perfect and everytime her head bobbed to the left she got terrible feedback/whistling. We will have her wear it 10-15 minutes each day and gradually increase the time as she becomes stronger. After having witnessed Kate's first moments hearing on her left side I am increasingly excited to have Mallory fitted with her aids. I received a emails from a couple of friends with a link to a Good Morning America segment where an 8 month old little boy had cochlear implants. The cameras were filming when they were turned on and he heard his mother's voice for the first time, truly amazing. Pretty incredible times we are living in! I hope to keep up on blogging better than I have been but times are busy!
Jack looking oh so cool!

This stroller is simply amazing...really not that difficult to maneuver and everyone is comfy!


You want to know how hard it is to get two babies to look at the camera at the same time? This is as good as it gets...Kate posing and Mallory looking scared!

Jack's Sisters!

Hello All,
Well as most all of you know we have had lots going on in the Nelson household...never a dull moment! I haven't had much time to catch up with everyone in the past five weeks but am ever so grateful for all of the support and prayers that you have sent our way.

Here is a quick update of all that is going on:

As most all of you know Kate was born with aural atresia and microtia of the left ear which basically means she did not have a developed left ear. There is a small 'ruffle' of skin where the ear would be, there is no true opening to the inner ear so she has no hearing in that ear. We got a CT scan when she was two weeks old and basically found out that she is too small to really get a good look inside to see if the inner ear is developed. We are looking at plastic surgery in the future to reconstruct her ear, but that is at least 5 years away. If there was any reconstruction considered of the canal that would occur after the plastic surgery. Until then we are getting fitted for a bone conducting hearing aid to help stimulate that side and help her brain make those vital connections between sound and localization. Kate's right ear passed with perfect hearing! The doctors do not think this will effect her language development and with some therapy will develop just like all other children with normal hearing.

Mallory failed her hearing screening tests in the NICU so follow-up was recommended. Our first experience with follow-up left us devestated as the ENT told us that Mallory was most likely completely deaf. (Brings tears to my eyes just writing that). Thankfully we sought out another follow-up with Children's Mercy where we got a two hour ABR (hearing exam) that told us she has mild to moderate sensorineural hearing loss bilaterally. She can hear low tones and as pitch increases she has a progressive hearing loss. We are having ANOTHER ABR in five weeks to corroborate those findings and at that time will fit her for right and left over the ear hearing aids. With the amplification of the aids Mallory should be able to hear perfectly...we are not sure if her hearing will progress to more significant hearing loss but we were happy with the information we received and are taking it one step at a time.

All in all we have two beautiful baby girls that are a pure joy to love and care for, looking so forward to learning their individual personalities! They are super strong and healthy in every other way.

I will keep you all updated as I learn more about our futures and where we are headed. Again thank you all for your thoughts, I love you all!

Erin

P.S. Mallory is on the left and Kate is on the right

Indoor Play and More!

Playing at home gets old, for me and for Jack. We have had a great time at some indoor play places around town, and believe it or not these facilities have not cost us an arm or a leg!

Jumpin' Jack's is an indoor inflatable play area that is AWESOME! Here are a few pics of Jack figuring out how to climb to the top of the slides (and a pic of the traffic jam he created). Parents are also allowed to climb up these obstacles and participate with the kiddos! I somehow failed to capture a picture of Tom at the top of the slide with Jack! Not to worry, I am fairly confident that we will return.

This last photo is at the Mission Center Gymnasium that has open play through the winter. I think Jack has figured out that he is challenged in the height arena and he figured out, all by himself I might add, that he will need help. He walked over to the foam blocks, grabbed one to assist him in his dunking attempts....he still failed to make a basket, but the effort was definitely there!

February

Jack has recently decided that he is a reader. He will either grab a book or magazine and climb up into the large chair and start flipping through pages. His new favorite is the Sports Illustrated Swimsuit edition...seriously. I know Tom just loves this!
I am not sure why or how, but if Jack falls asleep in the car close to naptime he will not nap at all when we get home. This creates quite the obstacle when we meet others for lunch. Having Julie in the car to try and assist his staying awake is essential, although does not always yield success.

And finally, here is a video of Jack's new daredevil antics....he has decided to start jumping, or at least attempt, off of stairs. We have had some ouchies, but mostly just giggles of delight at his progress!

Long Absence!

Sorry, I have really, REALLY slacked on the updates. We are in the midst of trying to sell our house and all energy has been focused on projects...and let me tell you there is not much energy to be spoken of! Jack is doing fabulous...some brief moments of the terrible twos to come, but overall is doing well. Here are a couple of videos from my new flip video showing what crazy stuff is going on around our house!