Wednesday, June 8, 2011

Derrick's rash

Blogging mobile

I just enable the mobile blogging with my phone so hopefully this blog will see an annoying onslaught of daily photos of my kids. :)

In other news, despite not eating dairy, egg, soy or peanuts Derrick continues to have a rash and is crying in pain during the day. I caved and gave him tylenol this morning and he is blissfully sleeping in his swing right now. I am now going to add wheat to the "no eating" list and we'll see what happens. Not sure what I will be eating now...but there has got to be something!

Bree is talking up a storm and does a lot of two word phrases. We are working on three word phrases, and hope that she continues to make this amazing progress.

Riley is her usual self. She is funny, and too smart for her own good. Just last night she kept telling me "Daddy and I are going to a movie....do you want to come Mommy?" When I asked Adam about it, he said he had no clue what she was talking about. Ha!

Friday, June 3, 2011

Food allergies

Since Derrick has been born, we have had a suspicion that something just wasn't right. He had rashes constantly, was extremely fussy and in my mommy gut I just had a feeling. We have slowly learned that he has food allergies.

Now nothing is definitive until we see the food allergist on the 15th, but through trial and error (poor boy) we have learned that he cannot have dairy, soy, and possibly peanuts and eggs. This means that I also have to limit my diet to exclude things that he cannot have since I am nursing him. To say it is a challenge would be an understatement.

Thankfully an amazing friend (Aleasha Bram!) has a son with similar food allergies so she has been my go to gal when it come to all things food related. She gives me the dish on what foods to buy where and what to look for.

Because of his food allergies, we are unable to find a formula that will work for Derrick so that means that I will not be student teaching this fall. My family comes first, plain and simple. As much as I would love to finally complete my student teaching, I would rather have a healthy and happy family. In order to have that, I need to continue nursing Derrick and remain vigilant in our efforts to keep everyone happy and healthy.

There are days where I feel discouraged and frustrated with myself when it comes to these allergies. Just yesterday it dawned on me to check the bread I have been eating, and I discovered that there is milk in it. I felt (and still do feel) horrible. No wonder he has been so fussy.

I just hope that we can get this figured out as soon as possible, and can start moving forward with a plan to get both Derrick and I on a healthy eating/nursing plan.

Monday, May 23, 2011

Riley Kay

Beautiful blue eyed girl!

Bree Marie

Such a sweet girl...

Derrick Jason

He is growing too fast...

Wednesday, May 18, 2011

Drafts

I have about 3 or 4 drafts written that are unfinished. Between my preschooler, my toddler, and my 3 month old...life is busy. With just that it would be busy!  Here is what our schedule looks like:

Monday: Riley to school. Bree to PCH (intensive feeding therapy) at 2.
Tuesday: All kids home
Wednesday: Riley to school. Bree has speech at home with Mr. Brian Eyre at 9 and PCH at 2.
Thursday: All kids home. Bree has OT with Kim Grant at home at 2.
Friday: Riley to school. Bree has early intervention with Kyla Rock at 730 and PCH at 10.

I am not sure if you noticed, but Bree no longer goes to preschool. For now, we decided to pull her out. It was too many people going in too many directions and being too busy. Sometimes it is important to have a day where you have absolutely nothing to do, and I find that to be very true with kids. Sometimes they just need to have some time to play in their rooms or outside. Lose themselves in their imagination.

Feeding therapy is going okay. It is not the quick fix that I was hoping for (who doesn't hope for that?) but it seems as though they are taking the time to address all of Bree's issues and helping her work through them. This is so that she does not regress when she does finally start eating. On Mondays we can a co-visit with her feeding therapist and occupational therapist. Her feeding therapist is Marnie Madden. We love her. She listens to Bree, and makes it fun for her, but also knows what is best for her. Bree always wants to go play with Miss Marnie.

When we are going to and from therapy we end up parking in the parking garage. In order to park in there you have to park on level 2 or above, which means that we have use the elevator. Every time I ask Bree to push the buttons, she gets very excited and runs forward yelling "Oh boy!". It brings a huge smile to my face every time.

Bree knows her numbers pretty well so using the elevators gives a great opportunity to practice them.

When we started feeding therapy she weighed 22.8, two weeks later she was 22.7 (she had a puke bug the week before), and then she was 23.6 today!! When we started she was 87 cm tall (34.3 inches) and she was the same two weeks later, and then she was 88 cm tall (34.6 inches) today.

Here's to hoping that I do not have drafts...but actual posts more consistently.

Friday, April 8, 2011

At a loss for words

Well, not really since it takes words to write a blog post, but you know what I am trying to convey.

We just received a check for $500. It is to be used to pay for Bree's feeding therapy gas fund. A friend of my Grandma gave it to her to pass onto us. I do not know which one of her friends it is, but we will be sending a very thankful letter their way here soon.

I feel so humbled and blessed. Wow. Thank you does not seem enough, yet I do not know what else to say.

Thank you to whoever you are. This money means more to us than we can express. It not only means that we do not have to worry about gas money, or wrack up credit cards trying to get to and from her appts; it means that there are people out there who care, and who love our Bree just as much as we do. In today's world, that is priceless.

Thank you.

Monday, April 4, 2011

Mr. Sensitivity

We got off pretty easy with Bree when it came to allergies and sensitive skin. She does have some reactions to certain brands of medical tape, and sunburns really easily. However, that is the extent of her being sensitive.

Mr. Derrick is a different story. Here is what we have learned about our littlest man so far:

 - He is allergic to laundry soap and fabric softener that is not "free and clear".

 - He is allergic to the antibiotic ointment they gave us for his eye.

 - He has reflux. Which is something we are very aware of because of Bree. Right now, his is being managed by adding rice cereal into the breast milk that I pump for him. His coughing has almost stopped completely since we started this.

We are still learning things about our little guy, but we are also learning how to adapt and help him to feel better. Hopefully this is all that he is going to be sensitive with, but only time will tell.

Saturday, April 2, 2011

Ready...set...EAT!

We got word this week that Bree will be starting her intensive feeding therapy program on April 18th. She will go three times a week (Monday and Wednesdays at 2 and Fridays at 10) for eight weeks. We will be logging lots of miles on our van here soon.  Also, the skyrocketing gas prices will be wonderful as well. However, nothing will compare to how wonderful it will be to see our youngest girl learning to eat!

She has been making progess lately and wanting to 'try' our foods, but we are no where near where she should be. This therapy is much needed and we cautiously have our hopes up.

Wednesday, March 16, 2011

Long time, no type

Life is a little hectic around here. Since my last update we have had a bit of excitement. Bree ended up getting pneumonia, and that prolonged our seperation parenting technique. After a dose of steroids she is back on the mend and we hope that this is for good this time! She is getting so big so fast...it is crazy.

Riley is still having a hard time adjusting to the level of attention she is getting (or lack there of) and has been acting out. We just got a new discipline book to read and try applying with her that was recommended to us: Positive Discipline for Preschoolers. Fingers crossed that it has some help in there for us. From what I grasp of the little bit I have browsed through the book, it is going to change up our parenting techniques a good bit. Which is needed.

Derrick is doing well and growing like a little weed. He is eating about every 2.5 to 3 hours and is staying awake for longer periods. In the past few days he has started to smile more when awake, and we have even heard a few noises like he is trying to talk.

I am tired all the time, and so is Adam. However, it is to be expected. Today is my first day home alone with them all by myself and we are doing okay. The girls are in their room right now supposed to be napping, but they are actually both on Riley's bed playing the tambourine and singing songs. Derrick is in his swing sleeping away and is due to wake up around 1 to eat. 

Hopefully it is not almost another month until I get to update!

Thursday, February 24, 2011

Catch up

Wow! Life has been crazy the last week and a half. Here's a quick rundown (because my little man is due to wake up any moment to eat).

About two days after bringing Derrick home, Miss Bree started up with her cough again and relapsed with her RSV. Because of that, Derrick is basically living in our bedroom when Bree is up and only I am allowed to touch him and take care of him. Adam takes care of Bree, and helps out with Riley too. My mom is here this week (she leaves tomorrow morning) and it has been such a blessing having her here. She is able to give Riley the special attention that she needs. With a new baby in the house, a sick sister, and a recovering Mama...Riley hadn't been getting a lot of attention.

On Tuesday I went to the doctor to have my staples from my c section removed (all 34 of them!!) and as they were taking out the staples in the middle my incision started to open again. They immediately called the surgeon specialist and he fit me in right away. It concerned me how concerned they were, and how quickly I was fit in. To make a long story short, my incision didn't heal correctly and there were pockets of fluid that had formed behind my incision so when the staples were taken out it popped right open. The open portion is about 3 inches across and being left open right now and the bigger pocket has to be packed with gauze strips and changed every day to allow it to heal from the inside out. I go back in next Tuesday to have it looked at. Hopefully it will be healing correctly and I can get back on the track to healing.

With all that has been going on, my Mom has been great to have here. Adam doesn't do well with blood or anything "yucky" so my Mom has been changing my packing. She has been helping with dishes, food and keeping the kiddos entertained and happy. I have promised my Mom that the next time she comes out it will be a little more fun. :)

Wednesday, February 23, 2011

Our little man

Derrick Jason Gonce was born on February 15, 2011 at 9:53 am. He came out screaming and crying, which was the best sound in the world. Nothing else would have sounded better to me. He weighed 6 pounds, 3 ounces and was 19.5 inches long.






He could not be more perfect. He is the spitting image of his Daddy when he was a baby. Derrick is a great nurser and there is nothing wrong with him. He's perfect in every way.

We could not be more happy.

Thursday, February 10, 2011

So close, yet so far away

5 days.

Never has 5 days seemed so close, yet so far away at the same time.

In 5 days we will be able to hold our baby boy in our arms, kiss his little cheeks, and count his tiny toes.

I had my last doctor appt today and it went well. I'm not dilated or effaced at all so he will hopefully stay put until Tuesday. I will have one last ultrasound on Monday at 330 just to double check that he is still a happy and healthy little dude.

I am grateful that Adam's parents will be in town and are letting us go out for one last night on the town on Valentines Day. We are getting a couples massage in the morning. Then I have my ultrasound that afternoon, and then we are headed to dinner and a hockey game! It will be great to have something to keep my mind off of the excitement of the next day.

This weekend we are going to hit up the zoo (not sure which day yet), and on Saturday night I have a girls dinner with my bestie Anneke. It will be great to relax and fit some laughs in!

5 days people....5 days. :)

Monday, February 7, 2011

Feeding Tube Awareness Week


I was not aware that there was a feeding tube awareness week. However, I am so glad that there is! We have some people in our lives that accept the feeding tube, and others that question what we are doing. They ask, "Well have you tried this? How about this? or what about that?" when talking about her eating by mouth. While I understand that it is well intentioned, it does frustrate me. We have therapists who dedicate their lives work to helping kids like Bree, and they see her on a weekly basis. We are trying our best to help her, and encourage her to eat with her mouth. For now, the g tube is a part of our lives.

I am so thankful that there is such thing as a feeding tube. Without it, Bree would not be here. She is not able to eat enough food or drink enough liquids by mouth in order to sustain life. So yes, she does get her nutrition differently than other children. Yes, it does take more time. Yes, I do wish that she didn't have to have a g tube...but she does. So we accept and we do our best with what we have.

 I can guarantee she is much better fed than most children her age because we control exactly what goes into her, how many calories, and ounces of fluid/food she has a day. For me, that is a comfort. She is getting the best nutrition that she possibly can be, which is allowing for the best brain and body growth for her. When she is sick, we can still give her food and fluids as long as her little stomach will hold it in. She gets all of her medicine through her tube, and I don't have to worry about how much she spit out.

We love our tubie.

Spectacular Bree

I just talked with Bree's speech therapist and he said that if she continues to progress at the rate that she is...she will NOT qualify for the developmental preschool program. This is GREAT news! In our state, kids from birth to three who need therapies have their therapies either come to their house, or they go somewhere. Once they are three, they are put into the state developmental preschool program and receive their therapies that way. He said that she may still need some speech therapy at least once a week, but she won't need it enough to have to go to the developmental preschool. His exact words were that she is "borderline" for needing the developmental preschool. He suggested keeping her in the preschool that we have her in now in order to keep her progressing along with her peers since she responds really well to that. Just knowing Bree and her tendencies to imitate what she sees around her, he worries that by going into the developmental preschool she would regress and adapt to what her special needs peers are doing. Since she is borderline for even needing to go, she would probably be one of the higher functioning kids there. He would hate to see her regress when we have the ability to keep her in a preschool where her peers are functioning at a normal level and she would strive to copy them and be like them. My heart is so happy to hear that news!

Friday, February 4, 2011

Bree is home!

Our little fighter is home! She is still pretty sick, but we can do everything we need to from the comfort of our own home. Nothing is like being able to snuggle with Bree, and watch some good old Dora. :)

Wednesday, February 2, 2011

2-2-2011

Little Miss Bree is doing better, but not well enough to come home yet. The doctor tried a trial run of turning the oxygen off for a bit and it didn't go well. She sits right at 90%, which is right on the border. They would like her to be above 90%. So she is requiring about 0.4 liters of oxygen support right now.

Last night she tolerated a night drip of pedialyte at 40 ml's an hour, which is the rate we feed her at home on her pump. Since she tolerated that they did stop the iv fluids, but have left the iv in just in case they may need it.

She also started taking some pediasure today. She had a bolus feed of 8 ounces fed to her slowly over an hour, but needed to be suctioned right at the end of it. The nose suction gagged her, and it all came back up. So the afternoon feed was put on the pump and was just pedialyte in order to make sure she is getting her fluids. Adam did mention that she has gotten 4 ounces of pediasure this evening and he is going to wait a little bit, and try to give her 4 more ounces. They will then start another night drip of pedialyte to keep her hydrated, and we will try again tomorrow to get her up to full feeds (full feeds for us is three 8 ounce feeds of pedialyte).

She cannot come home until she is off the oxygen. They need her to go a full night of being off of oxygen before she can come home. So for now, we wait.

Thank you for all your love and prayers! Keep 'em coming! :)

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Tuesday, February 1, 2011

2-1-2011

Bree had a rough night last night. She spiked a fever that resisted Tylenol and after giving motrin it did go down. They had to start deep suctioning her because the nurse is hearing some rattling and wheezing in the bottom of one of her lungs. They increased her iv rate to help boost her output. If her fever doesn't go away they are going to run a panel to test for infections.
 On another note...14 days until Mr. Derrick makes his arrival into this world! 
 
Evening update:
She seems to be doing better tonight. They did end up doing a blood panel on her and they had to cath her to get a urine sample to check for a UTI. She is still on .5 of a liter of oxygen, but her sats only drop when she is sleeping. Since this afternoon she has been sitting up and playing for about an hour, and she would repeat things Adam would have her say, which is waaayyy better than yesterday. They were able to give her some pedialyte through her tube and she kept that down so they are going to try a slow rate drip of pediasure overnight tonight. Fingers crossed that it works out well! She hasn't really had anything to "eat" since Saturday. I think it will help her body recover so much faster if she can keep down some nutrition.

She is still coughing an awful lot, and requiring suctioning.

Monday, January 31, 2011

Sick Bree

On Friday, Bree woke up with a small cough and was sneezing here and there. We ended up canceling a play date that we had planned because we didn't want to risk getting our friends sick. Saturday found her to be worse so I started breathing treatments and broke up her feeds so that she was getting smaller volumes more often because I know with her she tends to throw up really easily, and when you are coughing that hard...it is easy to lose your lunch (or breakfast or dinner).

Sunday found her to be even more worse. She couldn't keep down pediasure and when she was unable to keep down Gatorade Adam ended up taking her into Arrowhead Hospital in the afternoon. The doctor at Arrowhead told Adam in an indirect way that Bree has RSV, and that she will be fine because "when she was a baby we were worried about inflammation and swelling in her throat and airway because she was so small. Now it's just like she has a sore throat." He gave Adam a prescription for cough syrup and sent them home. Needless to say, I was not pleased and was going to take Bree straight to the pediatrician in the morning.

We never got that far. When they got home we gave Bree the cough medicine and 2 ounces of Gatorade and then put her in a hot bath with cold vapor stuff in it. We steamed up the bathroom to help her lungs open up and after her bath she got a breathing treatment and was put to bed. An hour later we heard her coughing and rushed in to get her. She was not able to cough anything up, but could not catch her breath. She ended up going pale/gray and completely limp and unresponsive in my arms. We called an ambulance, and just as they were showing up she started to regain her color and within ten minutes she was high five-ing the paramedics and playing with their equipment. We decided to have them transport her to Phoenix Children's Hospital just to be safe.

Once Adam and Bree got to PCH, she became very sleepy and was hard to wake up. That's how she still is. They have started an IV, and she is on oxygen. Her oxygen saturations (aka sats) are still lower than they would like with oxygen (she's around 91%), but they are trying a few different things to help her.

Adam is staying at the hospital with Bree for right now to try and reduce the exposure that I have to all the sick kiddos there. The last thing we need is for me to get sick and end up with complications or something.

Please keep her in your prayers, well wishes, or send healing vibes her way! She's in the best place that she needs to be right now and is receiving excellent care. Now we just wait for her little body to start to heal itself.

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