Baby Update

Sweet baby girl:

• is 5 1/2 months old. 
• had her eye doctor appointment and has cortical visual impairment.
• Starts therapy this week
• has her first cleft closure surgery scheduled for January
• has been given the green light to add prune juice via tube to her diet to attempt to help the constipation
• started having a seizure today as I walked out of my bathroom, I glanced at her then I saw throw up rushing up into her mouth/nose area and heard her gurgle/make a help me I'm drowning sound. Immediately, I laid her on her side and used a burp rag to get everything out with the suction nearby. Later today, the same thing happened again poor thing. 
• wears 9 month clothing. I've been using long sleeved shirts and pants during the day to make the tube feedings go better
• will be going with me to talk to the graduating class of foster parents again
• Has been making more sounds lately - it's been awesome!!!
• had horrible night sleep 3 nights in a row but the last two nights - now that's what I'm talking about!!! :)
• Has been with us for 8 weeks
• Finally saw her social worker yesterday for said social workers first visit to our house. She's leaving in 3 weeks for medical leave.
• is so very, very loved!!! :)

Thankful

Tomorrow's Thanksgiving. As frazzled as I am with so many things happening w/Baby A, my Grandma, Steve, and the kids, I am so beyond grateful for all that God has blessed me with.

Baby A is such a special, miraculous baby girl. We finally received paperwork re: her payment and it says she has NO special needs and needs NO specialized care. Yeah, anyways. Her SW is finally back in town and is coming over next Wednesday. This will be one of many issues we discuss.

Grandma - it's now been 1 year since APS got involved and therefore I've been involved in a daily manner. Her dog continues to cause problems at the new place - barking, peeing inside, pooping inside, and now peeing and pooping in her bedding that the housekeeper discovered. I received a phone call regarding her dog from her facility. I'm just waiting for the official eviction notice. Maybe they're waiting for the holiday to be over. She says if he goes, she goes. I'm NOT looking forward to dealing with that battle. My uncle (her oldest son) wrote an e-mail asking me for her address to send her flowers next week on her birthday. NOTHING about how is she doing, how are things going, how are you, etc. Maybe I was feeling extra snarky but that bugged me.

Steve's hips and bursitis have been an ongoing issue lately and now that the weather's been changing, that affects his hip replacements even more. He's been able to stay out of the bedroom during his down time though and that's made a big difference. For all of us.

Shane is still wrestling. He slept under the baby's crib last night and claims he got the best night of sleep ever. He did sleep until 10:40. How he was comfortable is beyond me. His ADHD is definitely at an all time high and he continues to have difficulty reigning it in.

Shelby continues to test the limits - with everything from her attitude to her lack of trying to sit back in her wheelchair. Her developmental/cognitive delays are becoming more apparent at certain times - she has to read 10 pages a day. She was on page 130. Her question to me: What page do I stop on?

Moose is finally in adoption mode after his fos-adopt family took him almost a year ago. We are so happy for them. Miracle Man is now crawling - ecstatic for his new family. Still can't get over how amazing it was to hang out w/JoJo at his Adoption Party a couple weeks ago.

Need a huge chunk of time to just focus on getting the house in order. Not quite sure how I'm going to do that. Today - dropped Baby off at visit w/Biomom, drove to Grandma's, drove back to pick up baby, drove home to pick up Shane, took him to his ortho appt, drove home, started the basic chores - not the extra stuff that is driving me crazy. Doing some slow and steady work but not as much as I'd like but in the end, I suppose it doesn't matter.

I'm thankful for my life. Busy (Baby still has 4-5 weekly appointments on average) + my Grandma + my family but with God, I have peace and grace. Out of everything, I am most thankful for that: grace.

Moment in time

I was on the phone w/the computer fix it people. Had 45 min before I had to leave to pick up Shane. Shelby had to go potty. The computer peeps said they'd call back in 5. Great. Take Shelby potty. Grab a diaper for Baby. They called back. Working with them while they try to remotely access my computer. Change baby. Times ticking to get Shane. Tube feed Baby. Still on phone. Need to go soon. Shelby has to go potty. Again. Ask the man to hold on for a second while I hooked Shelby back to lift system. Helping Shelby meant I had to lift Baby right after a feed. Recipe for disaster. Put her in pram. Grab suction. Times ticking. Call Steve from cell to ask about what time Shane REALLY gets out of practice. It starts raining. Man finally hangs up after giving me last minute instructions. Shelby wants to be left on the potty chair while I'm gone. Put Baby in car seat. Buckle her into car seat. Frantically head to school - don't want my boy to think I forgot about him...try to figure out where to park. Call Steve again. Wait for Shane. Baby has a seizure. Needs to be suctioned. Waiting for Shane. Has he already looked for me then headed the back way out of school to home? Mommy guilt. Praying Shelby doesn't startle while I am gone and do a head dive onto the tile floor. Finally see Shane. Phew! Baby's still seizing. Bad breathing. Zip home. Oreo barks at our arrival. Uh oh, hope that didn't cause a startle. Get inside. Wipe Shelby. Put her back in power chair. Clean up potty chair. Suction baby. Document seizures on my phone. Shelby asks me if she is "severely disabled" because that's what I told the computer man on the phone while trying to explain why I couldn't stay in front of my computer screen. My mommy heart hurts. Yes honey, that's what you are. She zooms off to get ready for her friend. I tend to "my" sweet baby. Talk to Shane. Take a breath. All is ok again. We made it. God is good & so is pizza delivery

Up A-L-L Night

Last night Baby and I went to sleep. Nothing unusual. Little did I know it would be a night to remember since the poor little thing got the worst congestion and was so very fussy. I desperately wished I could suction it out of her but instead, she fussed and I did everything I could to comfort her. Finally around 5:30, things started getting better and by 6, she didn't sound wet/juicy any more. I still called and made a pediatrician appointment to rule out pneumonia. I'd rather look dumb and have it be nothing than risk "my" sweet medically complicated girl being sicker than I realized. Around 6:20 a.m. I called the home visit person for today to cancel. She called me shortly after the designated time to meet and she didn't get the message before she drove to my house. Oops! I felt major foster mommy guilt. Then it was a pickle trying to find a date in my crammed schedule this week. We settled on Friday after Baby's biomom visit.

Today still has a photo session, lots of reading homework w/Shelby, the boys coming home from wrestling, an early dinner, a former respite client coming over to meet the baby, shopping at Wal-Mart, etc. There's nothing better than realizing you're out of bread (well, fresh/not stale) until you're trying to make sandwiches in your sleep deprived state!!!

Appreciating life and service

Today's Veteran's Day and we are deeply appreciative of all Veterans - friends/family who have served, all the thousands who have served over the years, their wives/husbands and families, so thankful.

Today was a funeral for a woman who died in a car accident leaving a husband and 5 kids behind - 2 w/severe special needs. Made me think about life and how grateful I am to be alive. Baby has a shorted life expectancy...my dad's 1 year anniversary is coming up, my mom's been gone for years, I'm only in my 30's and an only child...Steve's mom died when the kids were babies...one of our foster blessings was on hospice...thinking about the election and people running for various positions that are pro abortion/partial birth abortion/ or ok w/allowing abortion until moments before a baby is born...ugh...life is so very precious.

I visited my Grandma before the funeral and at almost 89, know that her time is limited too...

Then tonight I went to the van to look for library books and the stars were out and so bright and limitless and I know that despite death, God is so much bigger. And I am so humbled and relieved at that thought.

Dwelling

The one year anniversary of when my life took a drastic turn for the unexpected is coming quickly. I don't know why I think so much about anniversaries but I do. Something to think about.

Friday: Took Baby to her visit w/biomom. Gave biomom her baby. I was talking to biomom when she looked at me and tears were streaming down her cheeks :(  I visited my Grandma, and had a good afternoon at home...Shelby came home after doing "study hall"...the boys came home after wrestling...we had a yummy dinner...good night.

Saturday:  We had a pizza party at my grandma's that I jokingly called a P.I.T. - a poodle intervention team. As usual when we arrived, the anti-barking collar was off. We talked and talked and talked about the necessity of it being on the poodle so he doesn't get evicted.  We had a couple easy hours at home before leaving earlier than usual for church to help out at the orphan booth and hanging out w/friends before and chatting w/people about Baby after.

Sunday: Friends came over to watch a football game, Baby had a great morning, the kids all did well playing together, Baby had a rough afternoon w/seizures and spitting up/needing to be suctioned. She finally pooped (yeah!!), we had a productive night...good stuff.

Tomorrow: we are going to a funeral for a woman we barely knew that attended the same church we do that was married and had 5 kids - 2 with disabilities. That's how we knew her - passing in the halls dropping off our kids w/special needs to the special needs ministry and/or the special once a month event the church holds. I just couldn't imagine being the husband, now alone w/5 kids, 2 with severe needs. Wow. Praying.

Drama

SHELBY:
This morning Shelby had multiple meltdowns at the kitchen table. Everything caused her to scream/cry/whine/throw a tantrum and nothing would stop it - it only escalated. Highly frustrating. Tried to use it as a teachable moment for what to do or more accurately NOT to do next time. We talked after school about it and problem solved more during dinner. Ugh.

BIOMOM:
I took Baby to her visit and asked Biomom about court. I knew from talking to the social worker yesterday but was curious about her version. She went OFF on her other daughter, the father of that daughter, the complaint she's filing, all the people she's calling, oh my goodness...it was wild!!!

GRANDMA:
I arrived at my Grandma's to be told at the front desk about K.C. barking. Again. More complaints. I went to her apartment and was he wearing his anti-bark collar? Of course not. Ugh. We had a talk about it. She admitted he barked last night on the patio. Don't know why she doesn't just keep the darn collar on or at the very least put it on during his barking spells. She claims he hardly ever barks. She says she'll keep it on. She tells me it's hard for her to put it on...then don't take it off!!! Ugh.

I arrived home, talked to the awesome gastro lady, had some down time, Shelby came home, respite came over, Steve went to wrestling to p/u Shane, ate a yummy dinner, did Baby stuff...the day ended MUCH better than it began - thank you God :)

Look Ma, No Tail!

Sweet baby had the procedure where they took out her g-tube the hospital put in six weeks ago and put in the button. It's so nice not to have to worry about her "tail" getting caught in the recliners, sofas, etc!!!  I was expecting more crying and more blood but she (and I!) did awesome and we are learning how to be super proficient with the new extension "cord" that now plugs into her button during feedings/med times. AND she got her first honest to goodness, yummy warm bath tonight - up until now it was sponge bathing but tonight that all changed!!!! AND another benefit - I don't have to constantly be ripping off tape off her sweet chunky tummy - there's no need to roll up and tape gauze and tape the gauze roll under the g-tube and tape farther down the g-tube to secure it more...the only tape she has is now on her cute face for her oral device.

Big relief- the appointment I've been looking forward to (and dreading a little - I had heard she would bleed like a stuck pig and it would hurt) is over!!!

Biomom had court today. Since I didn't receive a phone call telling me to bring Baby anywhere, I'm guessing the judge didn't say she gets her precious baby back today. I'll see her on Wednesday then I'll get her side of the story - better than nothing since the social workers rarely call.

Shane started wrestling today and he is exhausted.
Shelby's respite worker came over and did homework w/Shelby and her shower!!
Steve's bursistis is so bad again, it's back to using the wheelchair. Ugh.
I made my grandma's and my mom's famous apricot bars today - yummmmmmmmm!

Tomorrow is picture day for "my" sweet girl - can't wait!!! :)

Church "coincidences"

I don't believe in coincidences - I believe that what people refer to as coincidences are truly events perfectly orchestrated by God.

A couple weeks ago at church, we met a family after the service was over who has a few children with special needs. One of their sons I met has a mic-key button - something Baby will be getting on Monday. It was fantastic talking to a family who "gets it" - the challenges, the stares, the work, the lifestyle that a child/children with multiple special needs brings.

Today, Steve told me he saw a boy w/a repaired cleft lip. I didn't see the boy but we were sitting in church and service was about to begin. Baby started fussing so off I went to watch the service in the lobby. As people were wandering out once it was over, a woman came over, just seeing the back of Baby A and asked how old. I told her and she took a peek at baby and gasped. She called her husband and family over. The boy Steve saw earlier is their son and we had a fantastic talk about cleft lips/palates, ages of  kids when they had/are having surgeries, speech issues, oral devices, rubber bands...just stuff only people who have been there/done that can understand. We had the best conversation with them! Steve came over and talked to them for a while. So grateful God put them in our path today. :)

Before church - we had such an easy going day - Baby did well (overall), Steve was having hip issues/bursitis issues so he stayed on the sofa but was able to help w/a feed and do morning meds w/Baby, I showered Shelby, got bill stuff done, a couple loads of laundry, dishes, down time...the big dogs got their nails done...it was a fun, productive day. We had a super yummy dinner then were off to church. Before the cleft family came over, Pastor Brad came and talked to me for a minute about the e-mail I had sent him a couple days ago...just a GREAT day :)

This week I had been struggling w/the latest events going on in my life (Baby's issues, Grandma's dementia, CPS stuff going on, Shane had monster meltdown, Steve's bursitis, Shelby being a pre-teen, ants in the house, the one year anniversary of APS involvement coming up + my dad's diagnosis, all of Baby's visits/appointments as well as my visits to Grandma, Grandma's dog still barking since she won't keep the anti-barking collar on him, just life...)and I am just really, really appreciative to have a day like today.

This week's highlight is still seeing the phenomenal little guy who we adored for 50 fantastic weeks and is now 2...and seeing the video of the precious miracle baby we loved on for 21 weeks laughing and giggling...just LOVE "my" babies...never knew how much I'd treasure seeing the sweet babies after they left our home...

Wet

Written on Wednesday...Today, I had to drop off Baby w/her biomom for a visit. There was a man using a machine on the outside of the building flooding the cement near the doorway I needed to use. He was inches from the door, still spraying water, told me, "It's wet" and went on his merry way - didn't stop, didn't hold the door open, nope - just stated the obvious. Kinda like my hubby last night. Baby was convulsing badly on my tummy in the family room. He walked in, saw Baby and said, "Seizure!" Yup, thanks for being helpful honey.  Last week, Shane came home from school and shortly after, I noticed a ladder in my kitchen. I asked what he needed a ladder for. "To get my bracelet," he replied. Yup, again - perfect sense!

Baby's been busy - dentist appts x2, biomom visits x4, cleft clinic visit, gastro visit, IFSP and more. We are documenting how many seizures a day she's having and when she has a BM and when we have to give her an extra dose of seizure meds.  She's the cutest pumpkin ever today!!

Shane is getting ready to start wrestling next week - he bought new shoes, and just needs a few more things to start practice.  He started off carving his pumpkin w/enthusiasm...it didn't turn out how he hoped so the thrill was soon gone.

Shelby can't wait to see the trick or treaters tonight - she's always loved seeing the little kids dress up. She had to study for a test yesterday. She just wanted to memorize the answer key (1 = N, 2 = Z) vs. knowing the word and the definition.

Last weekend was great - Friday Steve took off and was super helpful. I took Baby to her visit while he watched a movie. I came home, he went with me to p/u Baby, we bought a new shower thing for Shelby, went out to lunch at a super yummy new restaurant, bought my Grandma's dog an anti-barking collar since he finally received the official complaint - stop barking or face eviction. Baby and I came home, Steve went to p/u Baby's compounded meds, then we went to Nanny's, put the collar on the dog, and went out to dinner - it was the most delicious dinner we've ever had - AWESOME!!

Saturday = road trip for a funeral to my Great Aunt, saw my second cousin and her family and talked to someone that knew my mom!! Crazy cool. We then drove straight to church and had a great time. We came home and made a super dinner. Great but long day.

Sunday, we did our family grocery shopping trip then baked up stuff for a potluck then went to JoJo's Adoption Party- he was our 5th foster blessing we loved on for fifty life changing weeks. We hadn't seen him since August 2011. It was INCREDIBLE!!!!!! The way he kept looking at me like I know her from somewhere but just can't figure it out...the way he and Shane were best buddies again like they used to be - oh my heart...love was overwhelming...it was just the best afternoon ever and of course I took an insane amount of pictures :)

Tomorrow we go to Shane's ortho to see his presentation of x-rays on where Shane is now, where he was and what the future plan is...and give them lots and lots of money for this phase of ortho work. I'm excited for Shane but feel horrible that it's 6 years and counting...poor baby...