You're my Sweet

I just peeked over at our blog and realized its been 6 months since an update! I keep a pretty good update on Facebook but there is something cathartic about blogging. So much awesomeness has been going on.

Roman - - The dude is smart. He turned 5 last October and is starting Kindergarten in September. We are trying to ready him for school and we are seeing so much development! He can read so many words. We've lost count. At least 35+ words. He is just so full of excitement for everything and loves life. He still loves to cuddle and just loves his family so much. He is growing into an amazing little guy. Everyday I have a moment where I look at him and think of him being a newborn. He made me a Mama and we have a bond that is irreplaceable.

Finn - - Ohhh Finn baby! He turned 3 in November. Finn is the most loving boy. He tells Stella and I how pretty we are and how much he loves us. He tells Sam ALL day long "I love you Daddy!" We are in the trenches of the "terrible 3's" where my smiley boy goes from pure JOY to  a hot mess, really quick. He is still learning sharing, consequences and discipline. He is really coming out of his shell and very hyper and talkative. He just has the most beautiful brown eyes, it just melts my Mama heart. He looks up to Roman and wants to do everything Ro does.

Stella - - She turned 1 last week. Where did this year go?? I put on FB how amazing her 1 year check up with the Neurodevelopemental Pediatrician went. He had nothing but good things to say. Last time I blogged, I had written about how he wanted her to have a shunt, A week after that, her Neurosurgeon said that she didn't think she needed one. When we saw him last week he seemed happy she didn't have one and thought she is still doing good without one. He did a PT assessment of her and said "Oh yeah, this kid is definitely gonna be a walker." So when I first heard this, obviously I was overjoyed. BUT after we left the appointment, I told Stella that I wasn't gonna go light on the PT just because he said that. PT is not just once a week when her therapist comes over. It's all throughout the day. From having her crawl around and stretch, without her braces on, to standing in her "standing frame" twice a day. We do lots of work with her standing at the couch and doing "side steps". It's just a huge part of our lives. Her PT thinks she will be a walker (isn't that what they call the zombies in Walking Dead?), but we know this will take time. When she starts being able to cruise along the furniture, we will try out a pediatric walker. There are no guarantees about her future mobility but we will give her every opportunity to see what she is capable of. As of today, she is a FAST crawler. Shes in this transitional crawl where its a little better then an "army" crawl but not quite the 4 point crawl that most kids do. Just yesterday she went from a laying to sitting position, which is GREAT. She just freakin amazes us!!! Other then all that medical stuff she is just LOVE. She laughs all day long at her brothers and almost always has a smile on her face. I'm proud to say she is still nursing. Not too often, maybe 3 times a day, but it's still great we made it this far.She loves exploring, eating, and interacting with her brothers.

Other then all the kid related bragging, stuff is just good over here. Sam and I are working on using our spare time (what little of it there is) on productive stuff. His main focuses are writing and playing music. I am pushing myself to read everyday and try to spend some time for myself, even if it's just giving myself a pedicure or taking a long bath. It's just SO easy to spend every second with these kiddos, then after they go to bed, worry about housework, then catch what sleep I can. I gotta remember that I matter too!

My husband is just a rock star in this house. When I tell people that I'm lucky to have him and that he is so great... I'm not just saying it to be nice. He is encouraging, and honest, and always knows how to bring me back to reality when I'm asking all the "What if" questions. I need that because I am my own worst enemy. I sit, and stew, and question, and worst case scenario not just Stella but Roman and Finn too. I am a natural worrier. I can say it is getting better. I see happy faces in front of me all days long, so I must be doing something right.

Anyone else obsessed with The Lumineers Song "Ho Hey"? I love these lyrics:

I belong with you, you belong with me, you're my sweetheart

I belong with you, you belong with me, you're my sweet

Today was the first of many appointments at Childrens this month. We didn't have our first appointment till 11 so it was nice to not have to wake up pretty much in the middle of the night to be there early. We got up at our normal times and ate breakfast then were on the road by 8. Our first appt was a PT assessment. Stella has a PT who comes to our house every 2 weeks to work with her but this is more of an assessment of her muscles. Thankfully she was awake and happy most of the time. She showed the therapist her rolling and sitting and grabbing at objects. I'm always a little sad when she is tickling her feet and ankles and there is no reflex or movement. She can move her big toe and feet but not on a reactionary level. A lot of times when we are out, people come tickle her feet. I think it's just something people do to babies. Her big grin and giggles always distract people from the fact that she has no feeling. Her sensation starts about mid-calf. When I see other babies her age, unfortunately, I compare their feet to hers. Hers are precious and tiny and I kiss them daily, but obviously they do not move like a "typical" baby,

Anyways, the therapist thought she was doing really well. Her hips are showing more movement and are much less tight then when she was born. She thought her tracking, head control, and strength were good.

After this appointment, we took a little break and then went to see Dr. Walker. He is her neurodevelopmental pediatrician. Before he came in, we talked to a 'fellow', who answered my many questions. I brought a list! I read so much online but when we get to actually speak to a professional, I like to get their opinion. We talked a lot about her latex allergy. Did you know Koosh balls have latex? No Koosh balls for this baby. No balloons either. That one will be harder as she gets older but her big brothers are learning they can't have them.

So.... to the shunt. Her head is measuring off the charts. She is doing so well but it's hard to ignore the fact that her head circumference is getting bigger and bigger. So she will have a shunt placed. It is a great invention for people who need them but can be a hassle and have known to malfunction, get infected, and require revisions. It is considered brain surgery. She will have 2-3 nights in the hospital.

I know this is good for her because the extra fluid needs to go somewhere. The doctor really wanted me to know how intense her head will look when its done. She will have a horseshoe shaped scar that once she grows hair, will be unnoticeable. She will also have a small incision in her tummy, where the catheter will be inserted, It runs from the valve in the brain, all the way down to her tummy, where the excess fluid is drained and reabsorbed.. Everything is internal. Once she is healed and with a head of hair, you wouldn't even know it was there.

I'm pretty numb tonight, Stella is my everything. My logical part of my brain knows she will do great but my mommy, emotional side is hurting. She can't nurse for 6 hours leading up to her surgery. I'm praying that she does ok with that. I love her so much and just have to pray, pray, pray for this to all be ok.

Her doctor was really happy with how her back scar is healing. Now that she is getting bigger, it's looking so much smaller. He showed me where to feel her spine where her defect is. You can actually feel the separation of bone. We do massage therapy with her but I try to avoid that area. In about 2 months she will get her first set of AFO's (braces) to help with weight bearing.

In this next few days we will find out more of the game plan. They may want a current CT or MRI before surgery. We have an appointment already set up for Wednesday. So we are waiting to see if they want to do surgery then or wait a week.

Prayer Requests:

1. That Stella does well under anastheia, comes through the surgery with flying colors, and heals quickly.

2. That she does not encounter an infection or malfunction. Many things can fail on the shunt and extra revisions can cause a delay in healing,

3. That Sam and I can emotionally get though this surgery. That we can be strong watching her being wheeled off into surgery. Also, that the boys do ok during this and don't get lost in the stress.

4. That Sams work schedule can work around this and any shifts he cannot work will be filled.

PHOTO BOMBBBBB!!!

These are some pictures from the last couple weeks. Some I already posted on FB. These kids are just so happy and smiley. Always a good photo op! We took a couple days and went down to my parents house then drove out to Long Beach for a day. Boys played in the ocean and Stella nursed and slept in my arms. We spent another day at Lake Whatcom. Most of our summer days are spent at home, playing outside. The boys jump on the trampoline and Stella and I hang out in the shade. Sam enjoys playing guitar outside. 

So whats going on with Stella right now? She is almost 6 months old! She is rolling around, starting (a little bit) of solids, grabbing at objects and blabbering and learning her voice. We took her swimming with the boys and she LOVED it!! She is just into size 2 diapers and her 6 month clothing. I think I am in a bit of denial about her getting bigger and haven't gotten rid of her newborn clothes yet!

Medically, she's doing pretty good right now. In the beginning of the month we found out she had a UTI and some reflux into her of her kidneys. Her Urologist suggested upping her caths to 3x a day. After she finished a course of antibiotics, she started a daily low dose antibiotic. She was having a 'Urodynamics' test done when they found the UTI and couldn't finish the test. It's a test to see how her bladder functions, and it is rescheduled for the 31st of August. Her renal ultrasound showed the reflux. Going from 1 cath a day to 3 is not too much of a change. It's just another added part of her daily SB care. The whole process takes about 15 minutes. After her next test we will know more about her bladder but from what we know right now she does not empty it completely. She can void on her own but there is some residual urine left. Cathing removes that excess urine. If that urine was left it would reflux back into one of her kidneys, causing a higher risk of developing a UTI. Eventually I will not be talking about ALL her medical complexicites :)

We are still on "The Great Shunt Watch!" She had an MRI and we had the same conversation we've been having since she was born. The MRI pictures show that her ventricles are enlarged but she is tolerating the pressure. Her neurosurgeon thinks maybe some kids handle the pressure more then others. Signs of not handling the pressure would be lethargy, vomiting, extreme fussiness, and "sunsetting eyes" where she wouldn't be able to look up. Stella has another MRI on August 22 where we meet with a new surgeon. Her other one is on paternity leave. I asked about what if there was brain damage being done that we didn't know about. He said there is just not enough data to show that enlarged ventricles cause brain damage. He sees kids in the clinic with SB and no shunt who are progressing well. Stella is thriving and amazing us so I am trying not to worry. She has a slight gross motor delay (which is most likely contributed to her S1/L5 spinal defect). From what we know she has no feeling in her feet but I have seen her toes move and ankles flex. When I fill out her assessments she scores very high on the communication section and her fine motor skills are great!

Her other big appointment in August is with Children's PT and Neurodevelopmental Pediactricain. I am hoping we start talking about getting her started with orthodics. She cannot bear weight with how her feet flex up so getting her a pair of braces will help her . I can stretch her feet all day but I think having braces on her feet will help her. The PT may want to wait until shes a little older but I am interested in hearing what they have to say. Stellas Occupational Therapist thinks it would be good for her. By the way we LOVE her therapist and shes only here for a few more sessions. Hoping we like the new one too!

Her Neurodevelopmental Ped is an awesome doctor! He is the go to guy for all our questions. Thankfully we have not seen any issues with her 'Chiari Malformtion' or 'partial agenesis of the Corpus Callosum'. Those are those brain abnormalities that may never cause an issue but we are always thinking about them.

I know after reading all that information it sounds so scary! But really, all that is just second to how amazing Stella is. She's just a baby. She's a little sister who laughs at her brothers and loves to cuddle and play and eat!! We are sooo lucky she is in our lives.

Funny Words

My kids have quite the vocabulary. They SOAK up everything we say. Lately I just can't get enough of there conversations. Here are a few things I've heard lately.

Phineas (Age 2)

-"Open the freakin'  door!"
-"I love my mom. I love you Missa."
-"Call me Phinny Jack Abraham."

Roman (Age 4)

-"Mommy, why do aliens live on Mars, and humans live on Earth?"
-"When I'm a man I'm gonna do dishes and mow the lawn."
-"What was I like as a baby?"

My boys talk ALL DAY. They have great conversations with each other and play so well together. They are usually playing Batman or Star Wars. Today they were cooking pasta for each other. They giggle and joke and are goofy little guys. So so lucky to be their mom :)

Stepping Out

Today I made the decision to totally step out of my comfort zone. During our OT session on Wednesday, our therapist mentioned the 'Parent 2 Parent' program in Whatcom County. It's a support group for families with children with special needs and/or developmental delays. They can match you with families with a child with a similar disability or medical need, or that has a child around your childs age. They also run support group meetings and activities for siblings. She mentioned a picnic for the program.

Today was the picnic.

We have so many supportive friends and family. Everyone in our lives always has kinds words for us and been nothing but amazing. I really can't complain! I do however, struggle with having other parents to talk with that have a child with special needs. I have met some AMAZING moms online that have children with SB. Even some that were born almost to the day Stella was! I also met a mom in Seattle who has a son that is older with SB. These parents are my live line! It makes this journey a little less lonely.

Sam was working tonight so I took all 3 kids to the picnic. It was at Fairhaven park. I wasn't sure what to expect. They had little stations set up all around for kids. Bubble blowing, face painting, and basketball, and a ton of other activities. There were kids (13 and older) who are trained in babysitting kids with special needs who were around to help. The boys had a blast!! I tried to watch them but give them some independence to interact with other kids. I was hesitant at first to talk to anyone. But, after awhile I warmed up and was chatting with a few different parents. Most of them had children in the 'Birth to 3' program.

I left feeling really good. I plan on getting involved more and they have meetings for 'Dads Only' that I know Sam wants to be a part of. Though no one there had a child with SB, just meeting other families that have special needs children was nice.

Next week is a BIG week for Miss Stella. She has a long day at Childrens. First off is a renal ultrasound at 7:30am. We need to check on her kidneys to make sure they are nice and healthy. Afterwards is a test called a Urodynamics test. She has to lay on a table for an hour while getting xrayed. They will test her bladder and what muscles work when she has to urinate. They also see how much her bladder holds and checking for an reflex. I can be there with her and feed her and comfort her during the test.

After that we meet with a Urologist. I'm hoping everything is going good and we can continue to cath her once a day. She has something called Neurogenic Bladder/Bowels that will require some pretty heavy duty surgery when she is older. For now her cathing is more to check how much residual urine is left in her bladder.

Then in the afternoon she has another MRI. It's been over 2 months since her last one. Her head went up 2 cm from 2 to 4 months. I was a little worried at her 4 month wellness visit but it still puts her in the 85th percentile. We meet with her amazing neurosurgeon after the MRI to talk about placing a shunt. I'm trying not to worry. I know and trust they will not place one unless they were positive it was time. And if it's time, then I am happy she was able to make it so long without one. It's a pretty straight  forward procedure but it does require holes drilled through the skull and that is just a scary idea. The hospitalization is only about 24 hours afterwards.

We are fiercely working on her therapies and yesterday she rolled over 6 times in a row from tummy to back. I can see everyday the fire in those bright blue eyes. She is just blowing us away with how strong she is.

I wanted to do my Finn blog entry but I want to do it with a good updated picture. So I will do that tomorrow! Things with Stella have been pretty good lately. She is such a good baby. I mean, at 2 months she was sleeping though the night and just very content. Lately shes been more fussy than usual. Not wanting to be put down and put in her swing. I worry when she is having a crying spurt but then she will be happy and smiling and back to her normal self.

She is just so hungry all the time! I spend hours nursing her and then end up supplementing with formula also when I got nothing left! I am hoping it's just a growth spurt. She is now 12 1/2 pounds and 25 inches long. My 2 main worries right now are a UTI or her needing a shunt. She has an MRI on July 5th. I am praying that foremost she does not need a shunt but if she does it is not an emergency situation.

I have been struggling a bit lately when I see other babies her age doing things she quite can't do. She is trying so hard to roll from back to tummy. She CAN roll from tummy to back, which is great! I just have to get over the sadness I feel. Especially when kids her age will be starting to walk. I think it's normal to periodically to feel a little sad but I try to snap out of it fast. We are lucky and blessed that she is thriving so well.

We recently added massage therapy to her list of daily activities. She seems to really be liking it. She is reaching more for toys and cooing and babbling a lot. When I took her to her 4 month wellness visit I filled out a questionnaire about her development. She scored very high in each category, except gross motor. She was a little below where a "typical" 4 month old is. It was great to see she scored so high in the communication area.