Hoppy Easter!

400

That's how many posts I have had since starting this little blog. I'm just slightly proud.

There was a reason for this blog post. Bree has been flying along with her accomplishments lately. Just as soon as she does something she's moving onto the next thing before I get a chance to post about it. She is now pulling to a stand on tables, chairs, couches, doors, refrigerators, dishwashers, legs, and anything she can. She is also cruising around on everything she can. And just last night she is letting go of those things and trying to stand on her own. It does last about a good 2 seconds and BOOM! down she goes.

She is so proud of herself, it is amazing to see. We are also very proud of her too. She's not a baby anymore...she's officially a toddler!

Insert sarcasm here

Time out works REALLY well for Bree. I mean really.

She REALLY enjoys it. Sigh. What ever will I do with this child?

Any ideas?

Buggin Daddy

Riley's prayer

"Time to ber-ay?" (Time to pray? She interlaces her hands and bow her head)

"God is good. Thank you for food. Love me family. Jesus name AAAAMEN! Abaluyah!" (Hallelujah)

Goodness gracious, I love her so.

Please spread the word...and pray! pray! pray!

Jason Gump is a close family friend and is battling with brain cancer for his second time. Last night his wife, Devin, had to take him to the ER for breathing difficulties and he in now in ICU in an induced coma on a ventilator. We need your prayers, your love, your positive thoughts sent their way. You can read their story by clicking here. Please say this prayer with me and please copy and paste in your status, or send messages, or spread it however you see fit: 

 

Dear Lord, please be with our friends, The Gumps. They are fighting a huge fight with brain cancer, and Jason needs you more than ever right now. Please send them a miracle. Please watch over Devin, Faith, and Wyatt while Jason is... fighting, and give Devin more strength than ever. In your name, I pray. Amen. 

 

We love you Gumps.

 

 

 

 

Positive thoughts, prayers...anything!

I am at my wits end. Usually I can deal well with whatever is thrown our way...but we've had a rough past two months. I had a falling out with a friend a while ago, and ever since then someone has been sick, all of us have been sick, someone got bit by a dog, fifths disease, ear infections, pink eye...the list goes on. Today Riley now has a bad yeast infection, and I suspect a possible UTI. We will see when we visit the pediatrician tomorrow.


Your prayers, well wishes, positive thoughts, or whatever you do to wish well upon others would be greatly appreciated. We have done everything except ask for the support of everyone else, so I figure it is time to draw upon our group of wonderful prayer warriors and well wishers. Thank you so much!

My face may be different, but my feelings the same.


I laugh, I cry, I take pride in my gains.

I was sent here among you to teach you to love.

As God in the heavens looks down from above.

To Him I am no differnt, His love knows no bounds.

It's those here among you, in cities and towns,

That judge me by standards that man has imparted.

But the family He's choosen will help me get started.

For I'm one of his childern, so special, so few,

That came here to learn the same lessons as you.

That love is acceptance, it must come from the heart.

We all have the same purpose, though not from the start.

The Lord gave me my life to live and embrace.

And I'll do it as you do, just at my own pace.

~Unknown

What'cha say?

Little kids are known for not being able to pronounce things correctly. I enjoy it so much. It is so cute to listen to them mispronounce common words. Here's a few things that Riley and Bree have been saying:

Riley:

W = Bubble wu

Flashlight = Flah flight

Adam = Alam

Baby Gavin = Bebe Gabin

Sister Bree = Sissa Bree

Bree:

Up = Bup

Bye bye = Bu-Bu

Sponge Bob = Spu - Bah

Sprinkles!

Being a mom of girls, I understand that a large part of our lives is going to be glitter, pink, purple, and all things bright. However, I was not expecting Riley to change the name of a common practice in our house. Most people call it "knuckles". You make your hand into a fist and bump 'knuckles' with another person in order to greet them, say hello, celebrate, or whatever you want it to signify.

Riley has changed the name to 'sprinkles'. It cracks me up. She has 'girlified' the act of giving knuckles. She hollers "SPRINKLES!!!" then pounds her little fist into yours with exuberence. I love her.

Coughing along

Well, the kids are on the mend, but Mommy and Daddy are still sick. We are coughing and hacking, but still holding things together. Today I am working on keeping the house clean, one room at a time. I clean a room, then force myself to sit and drink some water, and watch a show. Then it's off to clean another room.

Riley's room is already cleaned...and the giant pile of laundry that needs to folded is next! Adam has been given the rest of the week off on quarters, which means he cannot leave the house. So I have canceled my observations for the rest of this week in order to take care of everyone and keep the house in order.

Next week is spring break for the school I observe in, so we will have some fun activities planned for our family. After next week, it'll be back to the observations.

Your prayers, well wishes and positive thoughts would be appreciated on helping us to get better soon! We are ready to be all done coughing and hacking!!

Tech Saavy at 18 months

 

 

The many faces of Riley

This was within a span of 30 seconds....

 

 

  

  

  

Silly girl.

Sickness

Sickness has been creeping through our house. I woke up Wednesday with a sore throat that just got worse through out the day. I ended up going into urger care because I couldn't even swallow the saliva in my mouth without grimacing in pain. The doctor thought I had strep so I was sent home with antibiotics, and I was down and out for Thursday. I barely moved off of the couch. My good friend, Carrie Fay, was an angel and gave me some homemade rainbow chard soup (I think that's the way it's spelled)...it was delicious and just what I needed. Thankfully, Adam was able to take the day off because of how sick I was.

Friday was a tiny bit better, I still felt like a truck hit me, but Adam had to go to work. I sure wish he could have stayed home, but we managed. The girls watched a lot of cartoons. Every once in a while, kids are allowed to have a down day. And so is Mommy.

Unfortunately, Adam's work was ever so kind and thoughtful, and decided to put him on weekend duty so he was gone on Saturday as well. He was gone from 8 am to 9 pm. I was feeling a little ambitious and I built the girls a "cave" using our table, the table cloth, and a few extra sheets. I heard so many giggles and laughs that day...I think just the sound of those lifted my spirits.

Today Adam woke up with a sore throat just like the one I had on Wednesday so he went off to urgent care. He was sent home with the same diagnosis as I had. So Adam will have a follow up appt in the morning, and Riley needs to go to her pediatrician as well. She has an ear infection and needs to be checked out.

I am hoping that this sickness marches it's little booty right out of here...we don't need it or want it here....

Will you support or march for Bree?

Hello all our cherished family and friends!




We're very excited to be a part of March for Babies this year and hope you will join our team to walk in support of Bree and all other preemies!



Every day, thousands of babies are born too soon, too small and often very sick. We're walking because we want to do something about this.



The money we raise will support March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives. And it will be used to bring comfort and information to families with a baby in newborn intensive care. Even Bree has benefited already from the hard work that March of Dimes does. The surfactant shot that she received at birth to keep her lungs open and able to exchange oxygen was designed because of the support from people like you. With your support, even more medical advances can be made, and more babies be saved.



Please join our team. You can do so on our team Web page. If you can't walk with us, please help the team reach our goal by making a donation. You can do that online as well.



Visit my team Web page at: http://www.marchforbabies.org/team/t1381878







If you would like to learn more about March for Babies, visit the Web site at marchforbabies.org.





Thank you for helping us give all babies a healthy start!





The Gonce Family

www.flickr.com/photos/gonce

http://goncechronicles.blogspot.com/

Morning of insanity

This week I am observing in an elementary school not too far from home. Today, I was glad it was not too far from home because, boy oh boy!, did we have a crazy day. Riley had an appt with her orthopedic surgeon; the same one she saw when she was 9 months old for her hip. This time it was about her elbow that seems to like to dislocate.

So this morning went like this:

I left at 8 for school.

Adam took Bree to a friend's house around 8:30 ish and went home to grab Riley's diaper bag and get into the car to take her to her orthopedic appt.

8:45: Adam gets a call from friend watching Bree that her dog bit Bree. Adam high tails it there to check on Bree, and calls to arrange a doctor appt for Bree.

9:00: Friend takes Bree to the doctor while Adam picks me up at school to accompany him to Riley's doctor appt. I have a mild 30 second freak out, then am okay.

10:00 ish: Both girl's doctor appts went well. Bree is on another antibiotic to prevent infection since one dog 'tooth' pierced her cheek. Riley will not need surgery at all for her elbow issue. As long as it can be popped back in every time, all is well. If for some reason it won't, they will cast her arm in a specific position to force the ligament into the correct position. This is very rare and does not happen often.

The rest of the day went well, but we are obviously hoping for a much better morning tomorrow.

Trial run

This next week I will be doing a trial run of what most working moms do every day. I have not even started, but I don't know how the working moms do it. I know there are many who do not have a choice, and have to do it because of financial situations, but I am sure this next week is going to make me very thankful that we are not in that position. Some moms choose to, and that works for them. To each their own. Some moms would go crazy staying home everyday. Trust me, there are days that I feel like I am losing my mind, and all I am doing is putting kids in time out, or correcting them.

However, I think because I have experienced staying home with my kiddos, I wouldn't want it any other way. I couldn't imagine having someone else spend more time with my kid than I do. I know that day will come when that will happen because of school (if we choose to go the public school route), but I want to hang onto these short 5-6 years that I get them all to myself.

So wish me luck as I embark on this new adventure, and pray that I learn much. My respect and admiration go out to you working moms.

I never want to forget...

...that instead of "kiss", Riley says "piss". Like, "Mommy, I wanna gi you a piss."

...that today at the zoo, Riley announced to every one that the bird in the cage was a Macaw. "Look!!!! A MACAW!!" (I certainly didn't teach her that...I give all credit to Go Diego Go).

Last but not least, I never want to forget this sweet face:

 

Bree is starting to give up her pacifiers, and only uses them at bedtime, naptime, or right after she gets up. She has also started to become fond of blankies, especially fleece ones.  She seems to be growing up so fast...she is pulling to a stand on tables, can crawl super fast, and is very curious...and very stubborn. Her cry has changed recently in the way it sounds...she is growing into being a toddler and is no longer a baby. Sigh.

13 hours

7:30 this morning:

 

8:30 tonight:

I think her first day of preschool was a success.

Here we go!

So, we've had an eventful week so far...and we've still got two days left in it! Monday night we went into the ER with Bree because she was crying uncontrollably and was unable to be consoled. She had bright red cheeks, nose and chin and was not a happy kid. I was worried that her UTI had spread to her kidneys so into the ER we went. The ER staff were not very knowledgable with children, and 4 hours later we were discharged with a diagnosis of "fever of unknown origin" and "fussiness". Hello, that's why I brought her in!!! They did test her urine and were able to tell me that it was clear of infection.

So, the next morning we were off to the pediatrician where Bree was diagnosed with Fifths disease. It is a viral infection that causes a red face, a rash on the face, arms and chest, joint and muscle pain, and fatigue. So poor Bree has yet again more to deal with. However, she remains strong and is fighting it off. She does seem to want to be snuggled most of the time, and she cannot be left alone in a room without panicking and crying.

Our other big news is that tomorrow is Riley's first day of "preschool". We just aren't cutting it for her. She needs some kid interaction, and an environment that can stimulate her. We have enrolled her in Radiant Kidz Zone, which is a part of the church I used to work at. You can check it out by clicking here. She will be enrolled for two full days a week: on Tuesdays and Thursdays. We can check in on her at any time online through a web cam that is set up in all the rooms at the preschool.

The other good thing about this is that I can now step up and do the school observations that I need to in order to get my schooling finished up. I am only 3 classes away (and 12 weeks of student teaching) away from getting my bachelors degree in Elementary Education. This will be a huge accomplishment for me. Also, while Adam is in Korea it will be helpful as Bree has OT on Tuesdays at ten in downtown phoenix, and PT on Thursdays at ten at 59th and Thunderbird. Both are about 30 to 45 minutes away from our house. It is really difficult to take Riley to these appointments so while she is having fun in "school", Bree will have some learning of her own.

Whew! That was a looong post. Hope I didn't miss anything and this finds you all well.

 

 

A change in course

We have a change in Bree's antibiotic course. I got a call from the doctor today saying that the antibiotics we had her on were inefficient against the type of bacteria that Bree had. The cultures they took had started to grow and they were able to tell what kind of bacteria she had. When they first discovered she had a UTI they just put her on the most usual course of antiobiotics that typically clear up whatever it is. Now that they know for sure what it is, we hope this antibitotic will work well..and fast. Poor kiddo.

Kids this young are not suppose to get UTI infections (? not sure why), so they will be doing some extra testing on her to make sure all her anatomy is correct. She will have an ultrasound of her kidneys, and have some dye injected into her bladder through a catheter while they watch where it goes. If it goes back up into her kidneys (which is bad) we may be looking at surgery for her at worst, or keeping her on a low dose of antibiotics to help prevent infection.

Only time will tell. So for now we give this antibiotic once a day for the next ten days. And pray for her relief and healing.

Rocky Road

No, I'm not talking about the ice cream...I'm talking about the last few days for our family.

Bree has a UTI and yeast infection. She is not a happy camper at all. Which makes us not happy campers....

Through my life I have heard the saying "When it rains, it pours". That is how I am feeling now. Bree is in pain and whining, wanting to be carried and loved on, which is very valid giving how she feels. Riley, on the other hand, does not understand that. She only knows that I am holding Bree and not her so she cries and whines, and acts naughty because I can't pick her up too.

Sigh. I sure hope Bree's medicine starts working soon.

Bath time fun!!

 

  

  

  

  

  

  

  

Here we go....

...so my idea of having Bree take all of her volume of food she needs in the day time hours is not working so well. She can't seem to handle the volume of food, and if we go over 200 cc's  a feed, it all comes back up. She needs 240 cc's a feed 4 times a day in order for her to get her reccomended amount of calories for the day. We've tried breaking it down into more feeds a day, but for us as parents, it's not feasible. It takes an hour to feed her and then she gets down from her seat for an hour only to go back into it if she gets fed every two hours. That doesn't leave time for naps, doctor visits, therapies, anything. She doesn't even really get too much time to play like a normal kid would do. And without that normal play time she falls farther behind developmentally than she already is.

Sooooo....after talk between me, Adam and my best friend Anneke, we decided to order an Angelcare monitor. Anneke has one for each of her kiddos and she swears by them. They monitor the breathing and movement of the child and if they stop breathing (or moving) for more than 20 seconds, it will alarm and wake you. We decided to go with the deluxe version because it has two pads for monitoring instead of the usual one because Bree is a wiggle worm sleeper. She moves all over her bed, and sleeps in many different positions. This will allow me the peace of mind that I need in order to sleep while giving her a night feed. We hope to be able to give Bree 3 feeds of 200 cc's of formula during the day, and give her a shortened night feed of 280 cc's of formula. I am not sure how that will work out but I'd like to start it around 8 at night and have Adam turn it off around 12 or 12:30 before he comes to bed.

I hope to reduce the amount of time she has with a night feed, but also be continuing to supply her with the nutritional benefits that her body needs. We worked so hard for every little ounce that is on her cute little self, that it pains me to see her throwing up because we are trying to cram so much into her. I think any mother who loves their child is willing to try anything before causing them discomfort and pain.

(On a side note, Bree is an amazing, odd child and is getting all four molars at once. So, that does attribute to some of the throw up and discomfort that she is having. However, if we can help her...we need to.)

Resolution

I cannot change the actions of others, but I can control my actions, and my reactions.

The end of a ritual

Since having her NG tube placed in February of last year (can you believe we've been tube feeding her for a year now??) Bree has always had a feed of formula that ran overnight. We were told this was to help get in her needed calories and volume of liquids. Also, while sleeping children secrete a hormone that promotes growth, and by feeding her at night we are helping to encourage that. The rate and amount of the night feed has always varied and grown as she has grown. The last night feed she had was running at 38 mls/hr for a total of 380.

Wednesday night found me doing my usual ritual of taking a shower before I go to bed. When I got out of the shower, I heard Bree sounding like she was having a bit of reflux. This sounds like little gasps or little burps. I decided to check on her before I settled into bed. (It's about a 50/50 chance I check on her when she is like this as it is very very common). Am I ever glad I did check on her.

When I got into her room she was laying on her side with her tubing wrapped around her belly. I figured I would "unroll" her and get everything right. As soon as I rolled her onto her back I noticed the tubing wrapped tightly around her neck. I quickly unwrapped it and looked at her. She had a red mark on her neck from the tubing and she was very pale in her face. I picked her up and started rubbing her back vigoriously in order to get the blood circulation going again. After a very long minute or two she started squirming and whining. After another minute she started crying and woke up. She seemed fine so I laid her back down in bed and unhooked her night feed.

It will never be hooked back up again. I do not want to lose Bree simply because the doctors tell me she "needs" a night feed. We have re arranged her feeding schedule, and while it is hard to find time to go anywhere (she always seems to need to eat now), it is well worth the effort. I'd rather have her smiling face here with us than have it pale and dead from being strangled from her feeding tube cord.

The nightime ritual of preparing her feed for the night is ended.

Playdates

Pros:
1. Riley gets to play
2. Bree gets to play
3. Mommy gets some adult interaction
4. Riley goes to bed early
5. Bree goes to bed early

Cons:
1. Mommy wants to go to bed early.

Take two

Today we started on take two of the fish tank. Our previous attempt resulted in one of the fish (the upside down catfish) dying and apparently being sucked into the filter and getting stuck. We thought we had gotten him out, but we must have missed some because about a week later all the other fish started to die. Seventy dollars of fish down the drain...literally. (we flushed em)

So, this time around we went with the cheap fish at Petsmart.We've got about 6 zebra danio fish (they look like striped tetras), 5 beautiful male guppies with orange tails, 3 Australian rainbow fish, and one albino sucker fish thing. (Don't you love how I am so technical with the other fish, then can't remember that one?)

Just to spoil ourselves we got some new decorations for the fish tank. It has been about 3 years since we got new decorations so a change of scenery was in order. Adam approved my picking out of an old WWII plane that looks like it crashed and sunk. I picked out the super cool bridge/river piece that makes it look as though there is a river running under the bridge by having the bubbles hook up to it, run under some plexiglass and then up and out of some plants on the side. Last but not least, Riley picked out a T rex tank decoration. She has been obsessed with dinosaurs as of lately. But that's for another post.

We are excited about the new fish in the tank...it has been vacant for over a month, and it was looking pretty lonely over there. Now it's full of movement, bubbles and life.

Isn't life great?

New things, new life, new priorities

Not having the requirement to blog every night has been a great stress relief for me. My kids are great, but there is not always daily stories to be told or information to tell. Sometimes I was feeling like I grasping at straws when it came to writing a blog every day.

Now, I need to get into  a new rythym of blogging when there is something to tell. I need to take the time to write it out so the story is fresh and new in my mind and you, my readers, will be able to read every detail and/or funny expression from whomever the story is about.

So, what's going on with us you ask? Well, we've been spending more time with our friends Felix and Anneke and their two kids lately. It's great for me to feel like I have a best friend again. Someone I can tell everything to and not feel judged. Anneke and I are very similar in the way we think, (are both overly paranoid), and it is nice to have a fellow NICU mom who understands the therapies, appointments and worries of our kiddos. I am so appreciative to have her as a friend.

Riley is still becoming smarter and smarter day by day. She is very specific in her speech, and in her demands. She is getting a little attitude and we are trying our best to stop it in it's tracks. Some days I feel like we are doing a great job, then there are days that Riley has 9 to 10 time outs in a day.

Bree is a crawling crazy kiddo! She has pulled herself up on the coffee table once, but has not since then. She is capable, she just chooses not to in typical Bree fashion.

I am doing okay, I have good days, and I have bad days. I recently got a number of a psychiatrist that accepts Tricare and who is reccomended by a friend. (I need to re-get (is that a word?) that number from her since I deleted my text messages without thinking about it today) I hope to be able to make an appt soon so that I can get help.

Adam is doing well and has been helping me out very much with the girls so that I can do my teacher observations that I need.

Life is good. Hectic but good.