Oh the month of March

It has been a bit since my last post and my oh my have we been through the ringer, well at least Keagan has.

When we left last we were heading to IA City for an appointment with her OTO doctor. That appt went good and they decided that they were going to go ahead and place a tube in her good ear and take her adenoids out. While she was under they were going to take a good look into her other ear and see what they could see. This was great news, I felt like maybe we would get somewhere from this, oh was I wrong.

Not even a week later we headed back to IA City for surgery. She looked so cute in her little surgery scrubs and was in good spirits when we went in for her procedure. Words can not describe the feeling of holding your child as they become completely limp and pale from anthesia and as I walked out the OR tears just started falling. I sat in the waiting room I was overcome with emotion and could barely talk. After what seemed like FOREVER they came and got her dad and I. We sat in recovery and waited and waited and waited some more... finally the nurse came and asked me to come with her... again words can not describe the emotions that flooded my body. She took me into the PACU and told me they were having some issues getting Keagan to stablize her pulse/ox and they thought if maybe I held her a bit she would calm down. They told me that they had to suck mucas from her left lung but that it wasn't serious and she should be ok as soon as she calmed down. This was not the case... after a few hours and different meds and lots of tears she was admitted to the hospital. We only stayed one night but it was a long one... throughout that after noon she slept a lot, she did stablize but was not eating well. She did great through the night so we brought her home the next day. We went straight to my moms because we thought that would be the best place since we needed to keep her healthy... this again was not the case as my poor mom go the flu in the middle of the night.

We ended up coming back to our house in Bettendorf and spending the weekend there. I knew she was going to have some rough days but I was not prepared for what was in store for me. She had a really hard time and was super fussy, not sleeping or eating well... it took a toll on us both. Finally after a week after surgery I decided to call her peds doc and see if they could look at her... my poor girl had influenza a & b, RSV and puenomia... thankfully they didn't admit her because I could still get her to take fluids but no daycare for another week and breathing treatments 4 times a day... after a week of this we took her back to the doc for a check up and she was still having trouble with her lungs so they gave her a steroid and said keep her home for 24 more hours then she can go back to daycare...

Not one day back to day care and we are on our way to start our day and some high schooler wasn't paying attention and hit us from behind so hard that it threw us into the car in front of us.. what a tramatic experience... All I could think about is if something was wrong with her... nope she was all good, I had some minor whiplash... the car on the other hand had about 4000 worth of damage...ick.. luckily she was on her parents insurance and it took care of everything... Keagan got a a sweet new carseat out of the deal also... sooo...

After another semi-difficult week we returned to the doc again to make sure the steriods had done what they needed to do... finally they had. After that appointment we were off to IA City to meet with the plastic surgeon and to make sure her tube had settled into place and the place where her adenoids were had healed... Thank goodness these appointments all went well!

The plastic surgeon was very informative and very helpful... he will be monitoring her every 2 years just to see her progress... any surgery he may do won't be until she is at least 7 or 8 because she has to be big enough to take cartiledge from her ribs. He also was very positive that if some day she doesn't want to have a crooked smile, he can help her with that also... the thought of my babycakes losing her crooked smile will be bittersweet... I can not tell you how many days that crooked has made my life so much better... .

Its hard to believe she will be 9 months in 10 days... time really does fly... I am looking forward to a summer with less doctor appts and celebrating her first birthday...

We have a nuerology appointment on Wednesday and we are getting her immune system tested at the end of April.

She is currently 17.2lbs and 28"... someday she will grow, for now I will enjoy her little self!

Hope everyone enjoys Easter with their family and friends.. we are very much looking forward to it... we are also looking forward to family visiting next weekend! We miss Sarah and Bernard!

One of those days....

I woke up this morning feeling awful and not like sick awful but upset awful so I think its time to update and maybe it will help....

Since our last post we have had so many ups and downs! Poor Keagan has suffered from a double ear infection, double eye infection and a sinus infection. So off to the doctor we went! After 7 days of eyedrops and 10 days of augmeton(sp) we went back to the doctor for her second half of her flu shot and a recheck... guess what it wasn't gone! So now she is on a 10 day regimin of Cefdinir and is on Zyrtec for the next 30 days to see if that will help! The two pediatricins that we see both have said its probably time for her to get tubes but since we have an appt next week in IA city they will just wait to see what they have to say since she will have to get her tubes there anyway.

Last week or so we also had our cardiac appointment... Everything looked great! Talk about great news! It was a huge relief that her heart is in great shape and she has many more years in her life to live!

We also have had another therapy appointment and although everything looks great they are all significantly worried that she is suffering from hearing loss. This time we also met with a married couple that specializes with vision, although we do not believe she is currently having any vision issues they came because of the Duane Syndrom she currently suffers from. We won't be seeing them monthly but probably every 3 months or so just to make sure everything continues to be on track. Even they noticed a hearing issue though. As a mom I already feared this and I honestly can't wait til IA City and maybe finally we will get the answers we have been waiting for!

Oh IA City, as our appointment is only days away I think this is why my mood has been changing. Only certian people can completely understand my feelings as this day approaches. Our appt is with the cleft clinic which is made up of a team of doctors to evaluate, test and further diagnose my sweet girl. After all that testing we will also meet with our genetics team to go over their diagnoses for her... oh diagnoses... I honestly don't think I hate a word more than that! I am tired of this roller coaster! I have been soo stressed, anxious, angry, sad and guilty! Part of me wants to throw in the towel and just love Keagan for who she is and who she will be and stop all these tests and doctor appointments but where will that get me... where will that get her :( That little girl is the love of my life and I only want the best for her so I just have to suck it up and put my big girl pants on and deal with it. But that doesn't mean I don't harbor anxiety about it all.

I have had alot of outside stress the last few weeks which isn't helping my situation... some days I want to stomp my feet and throw a temper tantrum like a 5 year old! My entire life revolves around Keagan... I don't like to ask for help, I don't like to ask for things... she is my responsiblity and I am completely ok with that.. Sometimes I just wish people would think before they speak, even when you don't say something directly to me, It still effects me... especially if I can read it somewhere. Also I know I am the parent in the situation but sometimes I wish people would think about me first or at least Keagan... ugh I have enough to think about and stress about.

On a happier note... Keagan currently has 9 teeth and bites!! She doesn't know she is hurting you, she actually thinks its funny to make you hollar OUCH! She loves eating baby food minus green beans (guess she had to get something from her bapa)! Just a few days ago she started crawling and is now all over the place! And just this morning she pulled herself all the way up in her crib and decided to use it as a trampoline! She is such a silly girl! Keagan is getting bigger and smarter everyday, It makes me so proud to be that little girls mama!

Well I hope everyone survives the snowstorm tonight! Be thinking of us Monday as we make the trek to IA City and we have a long day there! Pray for answers and solutions for our sweet baby girl.

Heart Strings....

So I just got of the phone with the genetics tech and they want to see Keagan again sooner than we thought... When we go up to IA City in Feb they are going to schedule her an appt then.. this will give them time to go over the echo of her heart and explain more to us about what she will be going through... which is great, I love to feel informed about her... the real reason I write this is because they would like for her dad and I to get the same testing done to see where/how/possibly why this happened to her.

This is a real struggle for me because I dont know how I could handle the news that it was my body that caused her these issuses. I know I could not have prevented it and I love her no matter what but those of you who know me, know that I already do not want more children at this point and finding out that it was my DNA will only strengthen my desire to not have more children.. Keagan is my whole world but the emotional side of being a mom with a child who has some form of special needs is extremely hard.

So I guess I am seeking advise... do I or don't I? Doing it could help us help her and not doing it is selfish... but not doing it just may save this mamas heart....

Just a January Update!

Ok time for a little update on Miss Keagan as she had a few appointments yesterday! After a long weekend I am not sure why I thought it was a good idea to schedule all her appointments in one day but I did. First we went for her 6 months check-up. She only gained a few ounces and no inches (I am going to have a little petite girl). The dr said she was healthy and happy! I had a few questions for her since we haven’t heard much about her ears since we went to IA City back in August! She said a lot of my questions should be answered when we return to IA City at the end of February because we are meeting with a team of doctors and she is now older so they can get a better idea of what to do next. Although this isn’t the news I wanted to hear, hopefully we will get those answers soon! She did also say that she would not be surprised if they recommended tubes (which would actually be a relief because we have struggled with fluid for a few months now) After a few shots she was pretty mad at me but I still had to run and get groceries before our next appt.

 

Our next appt was with her Audiologist Margaret. We went in for a recheck because the last time we were in she had some much pressure that she got negative readings on her eardrum pressure. This time we sat in the room and she was able to localize sounds a little better but not much. I guess this is still common at her age and especially with her already struggling with hearing issues. She also tested her permanent hearing and she PASSED! This was a relief! It is the same test they do in the hospital when they are first born, it tests her hearing at 3 different pitches. I should also say that she only passed in her left ear, she did not test her right. Then we went into another room and they tested her eardrum pressure and again we FAILED! One step forward and two steps back… I just don’t understand. This means she has fluid back there again or something is prohibiting her eardrum from vibrating the way it should. HOW FRUSTRATING! She said she would see us back in 3 months this time unless I felt she needed to be tested and hopefully I got some answers when I take her to IA City.

 

Next we met with her therapists… which include a early childhood educator and a hearing/speech therapist. This appointment just went over the action plan they are going to put in place for her. They will be visiting once a month to interact with Keagan and make sure she is where she needs to be. Their main concerns are her cognitive development and her speech development. These are areas where she already shows that she may need some help. Jackie and Ann are both confident that she is progressing well and said that I and her family are doing a great job helping her grow! It was soo nice to hear that I was doing a good job because although I know I am doing everything I can for her sometimes I still feel like I am failing her and I still have some guilt like I in some way could have prevented her from having these issues. I know that I can’t and could not have but it’s very disheartening some days.

 

When all was said and done yesterday we got a letter from the genetics doctor with a full explanation of her appointment and their findings. Do you know how hard it is on a mothers heart to read a 5 page letter of everything that is wrong with my beautiful little girl…

 

Well I guess that’s all for this update… we don’t have another appointment until Feb 6 when she has an EKG of her heart.

 

Until next time,

Ashley

Post #1 continued......

Most recently Keagan under went chromosone testing... and we have gotten the results. She has 3 flaws in her chromosone chain... she has a duplication in 22 and 17 and deletion in 3.... the duplication in chromosone 17 is currently not something to worry about... but 22 and 3 are something we need to watch... they currently cause things like developental delays, heart problems, frequent ear infection and eye problems. They have reccommended that her dad and I also go through the testing to futher give them information on why this has happened to her. She also will undergo an ekg/echo of her heart in Feb. as well as meet with a team of doctors in IA City Cleft Clinic to see if or what they can do for the muscle and nerve damage in the right side of her face.

We have also been meeting with an audiologist regularly for testing on her ears. The news we have been getting is disheartening but we are still trying to keep it positive. We do not currently know if Keagan can hear out of her special ear but she can hear out of the left ear. Because of all the cold and flu germs going around she has been struggling with fluid and pressure around her eardrum which can cause hear issues. Also from there we have been meeting with early childhood education teacher/therapist who is going to meet with us to help us help Keagan. They are going to evaluate her every so often and make sure she is hitting her milestones and what we can do to help her meet those. Some of the things we will be doing is dictating our life, reading to her often and singing to her also... these things will help her learn tone, pitch, sounds and syllables while she is still calm enough for us to hold her. So if you see me constantly talking to her or acting goofy singing and what not this is why.

Ok so we have many more doctor's appts to look forward too but as for the moment we are just enjoying our beautiful little girl. We have our 2 appts in Feb then one in March and one in April so far in IA City.

I have the most amazing little girl, who is so beautiful and fun to be around! She is growing like a weed, eating food now and trying to sit up like a big girl! Now if we can just get her to sleep through the night :)

I think that is all the updating for now...

Until next time...
Ashley

So I am new to this...

Ok so I am new to this but I am going to try and use this to keep those who would like to know what is going with Keagan updated. All of the information you will read on her is information as I understand it... I do not claim to completely understand any of it or anything like that. I just ask if you read this or leave comments that you be kind and respectful.

Sooo lets get the basics on here and will continue to update with information as I have time...

Keagan was born on July 10th. When she was born, she was born with a malformed right ear. After not passing hearing tests in her right ear at the hospital we were referred to AEA here in Bettendorf for further testing. Throughout our journey these last 5 months she has had a bagillion different tests. So far she has had a clean MRI and a clean bone scan which is great news but she has had a few diagnoses'

So far she has...

hemifacial microsomia - is a congenital disorder that affects the development of the lower half of the face, most commonly the ears, the mouth and the mandible. It can occur on one side of the face or both. If severe it can lead to difficulties in breathing, obstructing the trachea and requiring a tracheotomy. It is the second most common facial birth defect after clefts, with an incidence in the range of 1 in 3500 to 4000

microcia -is a congenital deformity where the pinna (external ear) is underdeveloped (microtia). A completely undeveloped pinna is referred to as anotia (anotia). Because microtia and anotia have the same origin, it can be referred to as microtia-anotia.^[1] Microtia can be unilateral (one side only) or bilateral (affecting both sides). Microtia occurs in 1 out of about 8,000–10,000 births.  

duane syndrome -  is a rare, congenital eye movement disorder most commonly characterized by the inability of the eye to abduct or move outwards. It affects the neural pathways associated with the sixth cranial nerve and the parts of the brain associated with reason and taste^[