Tuesday, October 27, 2009

We Have Been Blessed....

Wow....If a blessing from a church that you don't even attend doesn't give us an attitude check up I don't know what would do it for us. Just 2 weeks ago we decided it was in the best interest of Kyleigh's health and well-being and in agreement with her doctors' that I go on medical leave for six months to care for Kyleigh at home. The goal is to get her back on track developmentally and physically so that she can have the cleft palate repair surgery. My being home is allowing me to focus on her therapies, doctor appointments and taking care of things that normally were pushed to the side because I was working full-time. Since I have been home Kyleigh has learned to sit up for longer periods of time and is tolerating standing on her feet while holding on to your hands. However, she hasn't been much for doing anything since Friday because she has been so sick with the flu. Kaitlyn is finally getting over her flu but she still has a terrible cough that sounds like she is very sick. She has been fever free now for over 2 1/2 days so we plan to send her to pre-K tomorrow as she is missing her teacher and friends badly (mommy longs for her to go back so she doesn't have to pretend play preK anymore and get told I am doing it wrong by a 4 year old).

My mom came by the house today with a present from her church. They had sent us a check to use to help with expenses for Kyleigh. I was able to cash the check today and go straight to the pharmacy to purchase much needed prescriptions for her and cough medicine for Kaitlyn. Thank you!!! They also sent an overabundance of non-perishable goods to our pantry. We have a pantry stocked full of canned goods, some items for Kaitlyn such as cereal, poptarts, cookies :), and even some eggs and bread. As I was putting away the groceries in our outdoor pantry and inside pantry I was overcome with emotions. How is it possible that we are so blessed by people in a church that only know us from stories told by my parents? Why is the God I cursed and was angry at so willing to send food and supplies to my family?

I guess what I know is that sometimes I get bogged down with the trials of life we are facing each day that I forget that I am promised to have a future and that it takes faith to withstand trials. It is definitely a leap of faith for me to be out of work and unpaid for 6 months but I have only been rewarded so far for this decision. Rewarded by the parents of my classroom applauding me and wishing me well, rewarded by the time spent with Kyleigh and seeing her sit up on her own for several minutes just last week, rewarded by having time to do preK work with Kaitlyn, rewarded that I can spend time with my family and now a pantry full of food. Wow....so on this rainy day where stress has not disappeared from our home I can still stand up and say, "I'm okay. It's a good day. I am so blessed."

Friday, October 23, 2009

H1N1 ---- Go Away Germs!

As my mom would say "Go Away Germs" (taken from the Bill Cosby show when Rudy was sick--good episode), we need the germs to go away from us. Kaitlyn has been sick since Tuesday with fever, cough, vomiting, diarrhea, and runny nose. It has progressively gotten worse and her fever returns after the Motrin wears off. Having both Kyleigh and Kaitlyn home together was difficult. Kaitlyn was made to wear a mask and stay in her room away from the family common areas and Kyleigh. She only came out to go to the restroom. Thursday afternoon, I had reached a level of exhaustion with caring for a fussy Kyleigh and a sick Kaitlyn that I called for reinforcements. My mom gladly came and took Kyleigh to her house where she was happy and playful. This allowed Kaitlyn to come out of her room and enjoy some time playing Candy Land and pretend play with mommy while she wore a mask still.

Today mom called and said that Kyleigh had gone from happy go lucky to running a fever. So I made the call to the pediatrician office explaining that Kaitlyn was not improving and Kyleigh was now running a fever. The appointment was at 5pm so Dennis arranged to get Kyleigh from my parents and Kaitlyn and I met them at the office. Dr. O'Kelley says that Kaitlyn is still fighting the H1N1 flu and that now Kyleigh is exhibiting the same symptoms. Now the state won't pay for testing to confirm but it is clear her signs and symptoms are following the same path. Therefore, he prescribed her Tamiflu but said it was too late for Kaitlyn to begin the Tamiflu and based on her symptoms and age it didn't seem applicable for her to have taken the Tamiflu on Tuesday. He said that the cases of H1N1 that he has seen have not been anywhere near as scary as the reports we have seen on television. I sure hope he is right. He says that Kaitlyn has about 3 or so more days of symptoms before she starts to make a turn around and that the Tamiflu would help reduce the time frame of Kyleigh's illness.
If either starts running a higher fever or showing signs of a secondary illness we have to go back to the office.

Needless to say we are looking forward to having sickness out of our household.

Wednesday, October 21, 2009

It is rough to be sick and 4 years old

Kaitlyn has the flu and bless her heart it has been rough on her this time. All she wants is to cuddle and snuggle her mommy because she feels so yucky and yet she is forced into quarantine in her room. If she comes out of the room she must have a mask on. She is pitiful when her fever is high and she is coughing. Of course once the cough suppressant and Motrin kicks in she is wanting to be active and driving me nuts because I won't let her out of the room. Being sick at 4 years old is like cruel and unusual punishment for all involved. I sure hope she gets over this soon and that no one else in the house gets it.

Tuesday, October 20, 2009

The 90/10 Principle

At the beginning of this school year we saw a very inspirational powerpoint at school that centered around the "90/10 Principle". At the time I was very inspired and thought, this is true. Now however, I think it is bologna because my life feels more like the 10/90 Principle or worse. So pardon me for a moment today as I use this blog as a means of releasing some bent up anger issues about life.

The 90/10 Principle states that 10% of life is made up of what happens to you in life and the other 90% is how you react to what happens. In other words, 10% of life is out of your control and your reaction to those events can make you have a bad day or not.
You can google the "90/10 Principle" and watch the inspiring slideshow yourself and it just might change your life but for this moment it just makes me more angry.

Well...okay so maybe if my bad day was spilling coffee on my shirt, or paint on the wall from a preschooler doing art, or formula on the floor but my bad days are built up of much more than that it seems.

Here is my 10% -
1. Beautiful baby girl born 4 years ago with vision problems and stayed sick her first two years of life
2. Beautiful baby girl born last December with vision problems 3- cleft palate 4- ASD and 5- many other health problems and can't seem to catch a break and get better
6. The state dropped our option for good health care so now I pay $60 every time my children see a specialists which in the case of Kyleigh is at minimum once a week.
7. According to the state department I have used up my FMLA for the calendar year and my current leave of absence isn't covered under FMLA which puts my insurance coverage on me and job protection at a minimum
8. Kyleigh keeps getting ear infections and her ear is still bleeding- no sign of things getting better
9. Kaitlyn has an unconfirmed case of the flu (H1N1) because doctor's office won't test it anymore but she has all of the symptoms
10. Bought a van that the sales person wrecked moments after I signed the paperwork and now they won't make good on the mistake by fixing the van
11. Feel as if I'm all alone in this universe with no one to talk to that can understand the struggles of being the mother of children with disabilities
12. Disconnected from my husband because we are both so busy- he has work and I have the kids
13- Is there really a point of continuing this list of complaints?

You get the point. I think that I'm close to giving up on searching for the light at the end of this gloomy tunnel. The good happy pills that the doctor prescribed only help short term. Drinking alcohol sounds like fun but isn't a cure either. So, according to the 90/10 principle I should look at all of my situations as the glass is half full and be positive. Well, that is bologna!

I dare any one of you to walk in my shoes for a day and react happily to all of these events. If you can walk around with a smile on your face and bitterness not in your heart then you can tell me it is all about God and how to handle life. Until then, ignore me if you will because I am having a really hard time believing that it is God's will for my daughter to have these problems and having trouble understanding that, "all things work to good for those that love the Lord".

On a more positive note, I do believe it is part of the perfect plan that I am home right now to take care of my precious girls. I only hope I can maintain my sanity during the process. Good night all and sorry for the venting, but I warned you from the beginning.

90/10, I say 10/90 - 90% of what happens to me I can't control and it is the way I react that controls the other 10% of my day. That just sounds more realistic. Of course, I only teach 5th grade math so one could argue I am wrong.

Monday, October 19, 2009

A Trip to Duke

Kyleigh and I took an un-expected trip to Duke today. We were seen at the Duke ENT in Durham that is considered the "community" clinic. We saw a Dr. Ryan. She was very nice and good with babies. My mom went with me. Kyleigh's ear drum is "irritated" and that is what caused the bleeding. The constant inflammation from the ear infections can lead to bleeding. So at least we got an answer. She said the blood has cleared except some around the tube, but the tube is clear and open which is good news. She said to continue the Ciprodex drops and keep our appointment with Dr. Kaylie the surgeon next week. She also couldn't understand the delay in the cleft palate surgery. She agrees that it is a catch 22 situation where Kyleigh can't get any better and bigger if she can't keep healthy from ear infections and she will keep infections as long as the palate is not repaired. Why is it that all of the doctor's won't get on the same page? Don't get my wrong, I don't want them to do a surgery that she isn't ready for and that could cause complications if done too early. However, I am exhausted with her remaining sick with infections that occur because of the palate. That's all for now.

Friday, October 16, 2009

Kyleigh Update and Another Ear Problem

So today Kyleigh was able to meet my students as I went by the school to drop off paperwork and say hello. Afterwards Kyleigh saw her nutritionist at the home. According to her records since September 10th, Kyleigh went from 67 cm to 69 cm in length and from 13 lbs 2 oz to 13 lbs 13 oz in weight. This is absolutely amazing considering the turmoil she has been through since September 10th. She has had the tube replaced in her left ear, a severe ear infection in the left ear, formula change, and eating difficulties.

She went down for a nap around 11am and awoke around 11:25 with a screeching scream. There was a quarter size amount of blood in her crib under neath her head. I was completely astonished because she had recovered quickly from the last surgery on 9-22 without any blood and since the last ear infection, had received an all clear by the ENT surgeon this past Monday. We headed straight for the pediatrician's office. They said she definitely has a gelatinous blood clot laying over the opening of the tube. There is an "unknown" explanation as to why it began bleeding to begin with. Assumptions are that she had an infection that was building and the pressure caused a rupture and bleeding. Another assumption was the unexplained. Nice, huh?

I'm so tired of getting no clear cut answers for her health. The doctor is new to the practice and very nice. He said we should question the need to wait on cleft palate surgery if indeed the cleft palate is going to continue to play a role in the ear infections. He also said we should switch ear drops to Ciprodex today and see her ENT either Monday or Tuesday, latest Wednesday to have them look at the clot.

Sounds easy enough except when I call for her ENT doctor at Duke I'm told he is "out of the office" this coming week "sorry". WHAT???!!! He is always "out of the office". Supposedly at a conference this coming week and they would get back to me if his associate could see us. They call back and his associate will be out as well but said since she has seen the pediatrician and is on an eardrop there isn't much else they would do at this point so just schedule to see Dr. Kaylie when he returns. Again.....WHAT????!!!! So we are scheduled for October 27th, never mind that she is supposed to be seen by Wednesday at the latest. Why does one doctor see this as urgency and the doctor that can help us is out of town and his associate says, "it can wait". Would everyone just get on the same page----PLEASE!

So I've put a call into the pediatrician asking that they get us in with the local ENT for a consultation visit and 2nd opinion next week. I am still waiting to hear from them regarding this appointment.

After the appointment Kyleigh went by the daycare to say "good-bye" to her wonderful teachers and give hugs and collect belongings. For those of you in the dark about this, I am on a medical leave of absence to care for Kyleigh so we have taken her out of daycare for the next 6 months in the attempt to get her back on track including cleft palate surgery and recovery.

That is all for now..stay tuned for more updates.

Tuesday, October 13, 2009

ENT update

Monday morning didn't work as planned. I awoke in the middle of the night with fever, chills and vomiting. So my mom and dad took Kyleigh to Duke ENT appointment. Thank goodness they were available to help.

Anyways, mom said Kyleigh did great for the hearing test and that her ear infection has cleared up. However, the tubes are no guarantee that she won't develop ear infections just means the infection can drain like it did this past time.

Since I was so sick my parents have kept Kyleigh at their house and I haven't had contact with Kaitlyn either. I am feeling better and hope to see both my girls this evening.

Sunday, October 11, 2009

Results are in...

Kyleigh's blood work came in last night. She has a low White Blood Cell Count but it is to be expected to since she has been sick and on antibiotics for so long and they saw the type of cells they wanted to see (whatever that means...I'm no doctor). Also, her sodium and CO2 was low but she has had diarrhea and vomiting and been on pedialyte for so long that was within normal limits too. All that said, we didn't have to go in for an IV of antibiotics or fluids- PRAISE GOD. And she slept better last night for the first night in a very long time. She has taken the new ProSobee formula better today. She is up to a consumption of 4 ounces today already which is major for her since she was only consuming 1-2 ounces per day this past week. She also managed to get a slimy, yet satisfying banana in her tummy this morning. She is perking up and starting to get back to her playful self. This makes me so very happy. Tomorrow we are off to Duke for the ENT and hearing appointment.

Saturday, October 10, 2009


Kyleigh went to the pediatrician today to find out why she was still vomiting, having diarrhea and refusing to eat or drink. They took blood work and we are waiting on the results...still. They drew blood at 2:00 and we are still waiting.... I can only hope that the phrase, "No news is good news" applies in this situation. If her blood work comes back abnormal it can mean one of two things- she needs an IV and hospitalization or a strong antibiotic. Either way I don't like the results. She just finished an antibiotic for her ear infection and the ear is looking better.

The doctor also wanted us to try her on Soy Milk. He said that even though she has a milk allergy she may be able to tolerate soy and it could be that she has grown a dislike for the Elecare. Point is we need her to eat so although I just placed an order for $200 of Elecare to be delivered, we are going to try the soy. However, she has resisted it so far too. She purses her lips together to the point that you would need to pry her lips open to insert the bottle nipple and that is not even worth it.

So, again---we just wait. I'll update later when I know more.

Friday, October 9, 2009

Kyleigh Update

Kyleigh is still struggling with this ear infection and her eating. She has been taking Pedialyte and Jello made with Pedialyte better today. She takes about 2 ounces at a time. I spoke with Dr. O'Kelley and he said to try and introduce her formula and solids again because her electrolytes may be off. She has continued to have diarrhea. I just offered her formula and she took 2 ounces successfully but unfortunately it didn't stay in her. Please pray that she gets over this quickly and we don't end up going in tomorrow. If her body doesn't accept food soon she will be facing an IV.

Wednesday, October 7, 2009

Rain Buckets Keep Falling on My Head

I know what you are thinking...the song is supposed to be "rain drops keep falling on my head", but honestly this past week has felt more like buckets of rain being poured over me. We just can't get ahead of the bad cloud---

Kyleigh sick since Friday- ear infection worse
Kyleigh refusing to eat all weekend through Tuesday evening
Van breaks down on side of highway

Then finally- Kyleigh drinks 3 ounces of formula for me last night. There was an celebration of joy in our house as my mom, Kaitlyn and myself shouted praises for her. It had been 5 days since she had taken more than 1-2 ounces at a time. She was so content.

Van is hopefully going to get fixed this afternoon.

Kyleigh drank another 3 ounces this morning :)
Now if we can just keep her improving and eating. She needs to gain weight and stay healthy.

So it appears that the rain cloud may be clearing---one can hope, right?

That's all for now.

Sunday, October 4, 2009

Kyleigh and another Ear Infection

My poor sweetie has yet another ear infection. Those tubes aren't magical that is for sure! It is her worst infection yet if you ask me because she never ran a fever with one before and this time she has had a fever and yucky green sticky stuff oozing out of her nose and ear. Eeewww---gross! She is such a good baby though. Despite it all she still smiles and laughs in between the pitiful cries of pain. The biggest problem we face is the little peanut has lost weight and she is struggling to put it back on. At her nine month check up she was 13 lb 4oz and this past Friday she was 12 lb 6 oz with clothing and diaper. Since Friday she has really not taken a bottle very well. It has been a struggle to get her to take in more than 2 ounces at a time. However, she loves to scarf down a bowl of yummy solid food so that is the route we are taking at this point. We have offered her solids mostly today because she must put the weight back on and she is definitely hungry. I only pray this season of sickness passes quickly.

PS If one more person says, "that's what happens in the winter months at daycare--- I just might lose it!!!"
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