To cardiology! JK’s heart checked out just fine. She had and EKG and an Echocardiogram. Both checked out just fine. I am relived but also wonder what is or was going on with her. I guess we will see if any symptoms continue, and what the pediatrician wants us to do. I am thankful the daily vomiting has stopped. But she still occasionally looks a little blue around the corners of her mouth. I am alternately concerned and feeling like this is just a JK quirk. If one thing is for sure it’s that medically all three of my kids are kind of quirky! We like to keep those doctors guessing.
After JK’s big cardiology adventure this morning she had her little buddy S over for lunch. They had a great time playing and I had to giggle because JK was wearing one of BK’s old dresses and S was in one of TD’s old rompers. JK is about 3 months older than S and S has 2 older brothers. It’s always fun to get the kids together to play. But even better is the mommy time! It was good to have someone to talk things over with today and sort of put all the medical drama behind us. S and his brothers have food allergies so S’s mommy has a little taste of what sorts of drama goes on around here. She is always a good listener and makes me feel a little more sane about things.
This evening is the big art show at the elementary school. I look forward to seeing what TD has done this year in art. Up till this year doing anything art or coloring related was never on his “to do” list. He seems to have enjoyed art at school this year though so I am excited to see what he has done! Not to mention the ice cream treat after the show. I think he is more excited for the ice cream than the art show.
In all the talk about seizures and BK I have left out a big chunk of whats going on at home right now. JK has embarked to keep us all on our toes in her own special way. She recently started having daily vomiting episodes. As an infant she had “reflux” and was treated with an acid blocker. She had what appeared to be reactions to foods several times and all reactions were vomiting. She also had random vomiting episodes on and off during her first year. Once she started solids I noticed several times over breakfast her lips would turn blue. I let the pediatrician know and she kind of brushed it off that these things happen and she would out grow it. With the recent vomiting she had another blue episode eating breakfast one morning. She kept eating during it, and the blue lips passed, but during a doctors visit today just to check on why she might be vomiting daily the doc decided the best course of action was to send us to cardiology. I am beyond nervous for this appointment. This is a totally new specialist for me. I don’t really know what to research, I have done a lot of reading today, but JK’s symptoms are so vague that I don’t really know what they are looking for. I guess I will have to wait and see what they say next Tuesday. Though JK was happy, she is back on real food now and no longer on the toast, dry cereal and apple sauce diet. Since they don’t think it is related to her belly, but to possibly her heart we were able to resume normal food.
Not much of an update from me, but I am still processing how I feel. Mostly I just wanted to put it out there so anyone who wanted to send prayer could do so. A favorite quote of mine has made me smile today. I don’t know who it’s from, but it is another good one to describe how I feel about my life some days. “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain!” Today, JK and I danced in the rain and tried not to think about what we might be facing next. I guess the rainy day suited my mood perfectly today.
Those letters, M, P and B, represent some of the first sounds that most children make. Early on they start with goo and gaa sounds as tiny infants. But when children start to babble and intentionaly put speach sounds together they are usualy playing with those M, P and B inital sounds. Words like Mama, Pop, Ba-ba or Baby are often early words children can master. Ball is another popular word in the toddler set. Today I watched my 15 month old in her weekly speech tharapy session struggle to figure out how to put her lips together. She has been seeing Ms.Amy weekly since she turned one.
JK is a happy, social and funny child. She loves party’s and other social functions, she loves the grocery store and getting to people watch and she loves the bus stop. The bus stop has people watching, the social interaction and seeing the big yellow bus come and go taking the kids to and from school. But JK is not saying much. She has master some form of “Hi” and “Yea” and she can say Da-Da but because its one of her few sounds it means a lot more than just her Daddy. She uses it in diffrent settings with diffrent infelctions to mean diffrent things. To us we can usualy use her cues and her vocalizations to figure out whats going on, but in terms of communication and speech development she is behind. After 3 months of weekly sessions with a speech therapist we had a huge break though today. JK said “-all.” She was trying to say “Ball” but could not figure out how her therapist could make the B sound. I watched Ms.Amy take JK’s little hand and put it over her lips and make various B, P and M sounds and JK would put her hand over her own lips and say “-all.” To JK’s credit she never got frustrated. She just kept trying. Show her a ball and she would smile and say “-all” she is a smart cookie and knew she had figure out something major. But she also relized that our version of the word and hers were not the same. It was heartbreaking to watch.
TD was almost an entire year older when he started speech therapy. He saw Ms.Karen for 3 and a half years. Its hard to compare the two any more because while as infants they were both so quiet we started JK’s intervention so much sooner. I am hoping that is one of the reasons for the differences. The difficulty with the Bilabial Consonant sound (M,P and B) really is concerning though. I wish I knew when TD developed those sounds.
Though JK has not been formally diagnosed at this point the therapist has on more than one occasion mentioned Child Apraxia of Speech. This is a little more involved than just a simple “speech delay.” CAS is actually a Motor Planning disorder and though it is not usually diagnosed under the age of 2 its sessions like this that remind me that the therapist is trying to quietly let me see that JK’s speech is not just delayed, it is developing outside the normal progression. I have faith that she will make a lot of progress in the coming year. And I can see how much progress we have already made in just 3 months. But it’s frustrating to watch your child struggle with something that comes so naturally to others.
A little update on our current drama and struggle. I have put a little bit of this on Facebook and various “mommy” sites I am on. But I have not really put it all out in one place well enough. I need to put it all in one place so I can go back later and look at it. Some times for me going back to digest what it was like in the moment is important. But also I know one day this will all be something to just roll my eyes at, I hope anyway!
JK was exclusively breastfed during her fist months. She lost weight in the hospital, but only took about 3 oz of hypoallergenic formula total over two days before my milk was fully in and she had a more than enough to eat. She gained really well the first two months. At 4 months we went back for a checkup and she had fallen on the growth chart from the 50th percentile to the 25th percentile. She was nursing almost every hour round the clock and refusing to take a bottle. The doctor and I decided that rather than wasting my precious milk I had very little time to pump anyway we would use formula to try to get her taking a bottle. She encouraged me to use milk based because up to that point we had no indication that there was a problem with milk. Unlike BK her reflux was well controlled, she was not a projectile vomiter and her poops looked like textbook breastfed baby poop. We got her to the point that she would latch on to the bottle and take about 2 sips, then scream like she was on fire. at almost 5 months old we saw the pediatrician again for something unrelated and she asked how things were going with JK and the bottle. I think at this point I was looking rough and JK’s weight was still slowing down. She suggested that for everyone’s sanity we mix formula and cereal and see if she would take it via spoon. JK loved it, she sucked it down. However by about the third introduction of this mix of milk based formula and oatmeal we had a horrible night of vomiting. The pediatrician checked her out and she was constipated so we administered baby laxatives and got her cleared out, about 3 days later we tried the milk based formula and oatmeal again. Same reaction, profuse vomiting in the middle of the night (about 3 to 5 hours post ingestion). I was discouraged. That was the beginning of us avoiding oat and milk. She eventually did start taking a bottle. I offered the hypoallergenic formula and she took to it like a duck to water. I had my break, one bottle a day for someone else to feed. Her weight seemed to pick up and by this point she was almost 6 months anyway so I started introducing fruits and veggies. She did well with all but carrot, but my other two had struggled with carrot so I was good to put it on hold for a couple of months. Eventually we did introduce rice, wheat, barley and some other grains. Her last oat trial at 11 months resulted in a delayed vomiting reaction. She at that point had also had a soy reaction and so at her 12 month visit we were referred to allergy. In preparation I offered a cookie with baked egg two days prior to our allergy appointment. More vomiting, but like the soy this was almost immediate.
Our first allergy appointment with JK was kind of a shocker. She had skin reactions to soy, egg, peanut, walnut, pecan, cats and dust mites. Well out the window went our plans for a RagaMuffin Kitten. I still can’t talk about Genevieve without tearing up a little. Yes I was going to name my expensive cat Genevieve. Anyway, I took JK for blood work and waited to hear how bad her allergies really were. I cleared ALL peanut out of my house. I was terrified JK would have a contact reaction to someone accidentally not cleaning up well enough. Fortunately my kids eat SunButter just as well as Peanut Butter, so TD who eats a “butter sandwich” daily didn’t even notice the change. I went into our follow-up with the allergist ready to face the words “epi pen” and “anaphylactic shock” I was terrified but knew I could do it. I can stay calm while my then toddler daughter would lay on the ground having a seizure, I could call 911 and administer rescue medication rectally. I could handle this. I was a tested emergency management mom! The day arrived and JK and I set off for the appointment. I prayed in the car on the way there for the strength not to fall apart in the office. I am fine in the moment of crisis but the worry of the inevitable “when will it hit” sends me into a tail spin. The doctor came in and he said “all her blood work was normal, she does not have food allergies” I was in shock! WHAT? Two weeks ago you sent me out of here with a list of foods she skin tested positive for?! Apparently he now thinks her skin test was “miss read” by his office staff? yea I am confused. The reactions were “barely positive” and the blood work shows no allergy.
I went home and digested this info for about 24 hours and then immediately called our pediatrician and said “HELP” what on earth am I supposed to do with this kid? Her feeling was that usually a positive skin test was taken more seriously than blood work in an infant this young. She wants to see the report before we decide what our next step is. She said definitely avoid the eggs, soy and nuts since we have seen reaction to egg and soy and the nuts are typically not considered safe at this age anyway. The negative oat and milk are also perplexing. We will be avoiding those as well for now. But who knows a milk trial could be in our future.
So that’s where we stand with JK and her allergies or intolerances. We stand in one muddy puddle with a pan and some prayer for gold, I mean answers.
The title of this blog comes from a quote. I have a minor TV addiction. I also love to read, I write poetry and I enjoy crafts. All of them are escape mechanisms for me. But TV is like a dirty little secret. I have my DVR record lots of different shows and when I am folding laundry, taking down time to re-charge or doing any number of other things I will have the TV playing one of my shows. This particular quote is from Grey’s Anatomy. “You think that true love is the only thing that can crush your heart; that will take your life and light it up or destroy it. Then you become a mother.” ~Meredith Grey (Grey’s Anatomy) I love that quote. It describes exactly how I feel about having my children. They are my greatest joy, but they also bring huge amounts of stress into my life. Yes having 3 kids can get complicated for anyone but ours like to keep us guessing.
Our oldest (TD) was a charming and happy baby, exceptionally easy-going and a real charmer. But he was hiding a few things those first few months. He was almost totally silent. Yes part of it was because he was not big into crying. He could cry, but he just didn’t do it often. He also just didn’t babble much, if at all. Then at about 6 months old one day I heard a rattle to his breathing. It got worse over the course of two weeks. He started to lose weight,. He was headed down a road I didn’t want to go. But like being the passenger in a car, there isn’t a lot of choice. It was about a year of visits to various specialists and trialing various breathing medications and doing lots of testing. Eventually he started to grow again and we got his breathing under control. They never really could explain it. It was like one day a switch flipped and he just was a very sick little boy. In the same way it just flipped on it also eventually started responding to the medications magically one day. Unfortunately the switch didn’t flip off, but it dimmed. We now control his breathing with asthma medication and his weight gain with nutritional supplements and he sees a GI. In the middle of all the medical drama the pediatrician and I noticed that TD was not progressing in speech. In fact at 18 months he had no words and had only just begun to babble. Fortunately early intervention is wonderful! Now you would never know he had such a significant delay. Overall, TD is in good health. He is also a smart little boy who is loving Kindergarten this year. His teacher says he is very popular, and very funny. She says he has a wonderful smile and can always make her laugh. He does struggle with some impulse control and behavior issues, but we are blessed with a caring and amazing teacher who is really taking the time to work with him!
Our second child was a beautiful and demanding little girl (BK). She came into this world with a bang and not much stops her from being that way to this day. She was delivered via emergency c-section after a placental abruption during labor. She had trouble maintaining her oxygen and almost had to be flown from our small community hospital where she was born to a “big city” hospital for NICU care. Fortunately she stayed at our local hospital in the special care nursery and with a few days of oxygen support seemed to recover. She nursed like a champ and all seemed well with her. We noticed some staring spells and I tried to ignore them. She seemed to have a gross motor delay, it had been a challenge to teach her to sit up, and she could not roll over at 7 months. She started Physical Therapy (PT) with the Infants and Toddlers program. They were coming out two times a month to work with her. I had to cancel our second appointment though because we were in the PICU down in the city. BK had a convulsive seizure one morning while I chatted with my mother on the phone. I had to hang up on Mom and call 911. She had 2 more seizures that day and we spent 3 days going though lots of testing. They sent us home “hoping” it was a fluke. It was not. Two months later she seized again. The neurologist we had seen for a follow-up visit after our PICU stay started her on the anticonvulsant Keppra. She went on to have seizures several more times. Unfortunately when BK has a seizure its usually the first of a series of them. We usually have to give heavy medications in hospital to get them stopped. The amazing and wonderful thing is that BK is now doing so well that she no longer takes Keppra. Its still a wait and see game. It’s only been a few months, but right now she seems stable with no medication! She also is a walking, talking amazing 3-year-old who knows how to get what she wants in life. Unfortunately since 3 year olds don’t unusually have much real control she usually tries to use tantrums to get her way currently. I am trying to teach her the idea that you get more flies with honey. She uses this to her advantage at school and they find her charming at preschool. Unfortunately with Mommy and Daddy the tantrum is still her preferred means to an end. BK is also no longer in PT. After the first set of seizures we added in private Physical Therapy. She had PT three times a week for months. But it worked. I admit she is a tad clumsy still, but most people would never know she had such a rough start or was so delayed physically. She did not roll over till she was over 12 months. She walked at 16 months and was running only weeks later.
Having a child with Epilepsy puts things into perspective. I will always worry that something could happen to BK when we least expect it leaving our son alone. Because of this we entertained on and off for a while the idea of having a third child. We were blessed with JK just 13 short months ago. It’s amazing how fast time flies! It seems like just yesterday she was a tiny infant who nursed every 1 to 2 hours and needed my constant care and attention. Now JK is walking. However, she is not talking. She has started to babble, but is definitely behind in the expressive language department. Because of our previous experience we have her in weekly speech therapy. She also seems to have some food intolerance or allergies. But that is a whole post in itself!
As you can see life in our home is rarely if ever dull. But each of our children is a blessing and the complications they bring with them are fortunately minor in the grand scheme of things. One of the reasons I wanted to start this blog though was so I had somewhere to write about all my kids’ ups and downs. I read another blog this week about the difference between the outside and the inside. That amazing mom of two boys has a son that is a beautiful and adorable little boy, and looks totally normal on the outside. However he is battling medical issues and on the inside things are not as wonderful as they seem on the outside. She talked in her post about how things like Facebook are there it seems only for us to brag about how wonderful things are. And I too find my self only wanting to post the good things. I need a place to put the rest of it. A place for those who love and support us to come and read about what is really happening here. Is it all going to be bad news here? NO WAY! We are blessed, we have 3 funny and amazing children and a very nice life. It’s not all bad, but it’s not all sunshine and roses either.