After months of waiting, the newest member of our family is here! Levi entered the world via c-section on August 8th, at 11:08pm. He weighed 6lbs4oz, and was 18" long.
My due date was originally August 26th, and I still feel that was the correct due date. Early in the pregnancy, ultrasound changed the due date to 8/22. My c-section was originally scheduled for 8/21, 2 days after my OB would return from a missionary trip to Africa. My OB sent me for a final ultrasound a few weeks before her trip, as she felt the baby was large. It showed him as being average size though, so she decided to stick with the 8/21 date. About a week later though, the radiologist contacted her and said he felt my due date should be 8/16, and that the fluid levels were a little low. Because of this, she changed my c-section date to 8/9.
I had my last doctor appointment scheduled for the morning of 8/8. I was up sick the night before, unable to sleep with horrible stomach pains. I felt very "off" at my doctor appointment, and started having some very sporadic contractions while there. She told me at that appointment that they changed my c/s time from 1:30 on the afternoon 9th to 7:30 the morning of the 9th. Which meant we had to be at the hospital by 5am. My husband works nights, not getting home until about 2am, so I knew he would be thrilled :)
That afternoon my husband dropped our two boys off at my parents' house on his way to work, since we had to be up so early the next day. That gave me the afternoon and evening to myself at home. I didn't know what to do with myself! I was missing my boys badly, and still not feeling very well, so I didn't do much of anything. I watched a little of a movie, then switched to the Redskins pre-season game. Around 8:00 I called my parents to say goodnight to the boys, and around 8:40 I decided to go to bed. I got up, started turning lights off, let the dogs out, then went to get ready for bed. That's when I realized my pants were soaked. And then the gushing started. My water had broken! I called my OB who was super excited to learn that we would be doing the c/s that night instead of super early the next day. I pretty much made her night :) Then I called my husband, who's first reaction was "nuh uh!", and then I called my parents.
I threw my hospital bag in my car and headed for the hospital. Yes, I drove myself. I wasn't having contractions, and it didn't occur to me that I shouldn't drive. Everyone has been shocked to learn this, but it turned out ok! During this, my water continued to gush. I guess if I'm going to have my water break, it might as well break really well right? My husband got to the hospital about the same time as me, and we went in through the ER before being taken to L&D.
My experience in L&D was awesome. My nurses were all great. They did an excellent job getting me prepped, and finally it was time to walk into the OR.
The epidural experience wasn't as great. The team was wonderful, but they had trouble getting it in. It took two sticks before it finally worked. I was sweating by the time they were done! The c/s itself went really well. Levi came out screaming mad, and my awesome nurse took some great pictures of the three of us.
Once in recovery, they brought Levi in to be with me. My first two boys I didn't get to see until I was in my post-partum room, so this made me extra happy.
The rest of the stay was pretty uneventful. We went home 2 days after he was born, and he has been the world's easiest baby. I am so very blessed.
Last Thursday Luke's SLP surprised me with the suggestion that we take a break from speech. We had just come back from being gone for vacation, and it kind of felt like it came out of no where. Her reasoning was that Luke's attention has gotten to the point where he's not able to focus enough during their sessions to benefit from them. She had mentioned to me on and off over the last few months that his attention was sometimes a problem, but I still never expected this. It's not a short break either...we're done with PROMPT until around his 5th birthday in November.
I left there very upset. I had hopes of being done with speech soon, but my hopes were more along the lines of DONE. As in he's doing so well we don't need speech anymore. So to be told that he was no longer progressing in speech due to other issues that have come up, was upsetting. The other thing that upset me was she suggested getting him into Child Find. Our experience with Child Find almost 2 years ago was far from positive, and I have no interest in going that route again.
Any parent that has been dealing with Apraxia for awhile knows that other obstacles often go along with an Apraxia diagnosis. Sensory Processing, Fine Motor, ADHD, Dyslexia, etc. Sensory issues have been suggested for him in the past, and on Thursday, his SLP mentioned ADHD. I'm not going to go into it too much, but we have had concerns at home too. The last thing I want to do is jump to any kind of label for him, especially since he's still only 4 years old. But I also want to do right by him, and make sure that he receives any help that he needs.
Adding to my frustration, we don't have a developmental pediatrician anymore. Our last visit was last August, the doctor we were seeing then now works for Kaiser, and we can no longer see him. After my talk with the SLP, I was upset with myself for not finding another doctor before now. But there's nothing that can be done about that. So I first contacted Children's National, only to be told that they're so booked they're not taking new patients for the foreseeable future. S.u.p.e.r. In that moment, I was right back to where I started 2 years ago when I was desperately trying to find someone to say yes or no to the Apraxia diagnosis. I refuse to sit back and do nothing, to let time waste away. I finally found The Kennedy Krieger Institute in Baltimore, MD. No appointments before November, but it's better than nothing.
So we're faced with what to do between now and then? My biggest concern is to not let his speech regress. He has come SO far, I hate the idea of any of it going to waste. So I'll be working with him at home some, using apps on the iPad, and some printables that I've found through Pinterest. My other goal is to work on his attention. He goes from one activity to another very quickly, and my hope is to extend the amount of time he'll spend on one thing. We're also getting him involved in sports to provide an outlet for his energy, and to get him in group settings more. Finally, through preschool, I plan to work on sensory and fine motor issues using Montessori style activities.
I started buying the next year's curriculum earlier than I normally would, as with the baby coming, we'll start the school year early. My plan is to get 5 or 6 weeks of school in, then take a month or so off around the time the baby is born. This is so that we won't risk not finishing the year until next July :)
Second Grade - Cody
The Reading Lesson - we'll finish this up pretty quick
Explode the Code - Finish Book 3 and start Book 4
Wordly Wise A
All About Spelling1
Language Smarts C
Horizons - Finish Book 2 from Grade 1, then move on to Grade 1 books 1 and 2
Evan-Moor Read and Understand Science Grades 2-3
Evan-Moor Daily Geography Grade 2
Beautiful Feet Books Early American History
Five in a Row
Preschool - Luke
Pre-K Printable Packs
Misc Preschool Workbooks
Lots of Fine Motor practice
Focusing on letter sounds, beginning handwriting, preschool math
We will be studying early American History starting with the explorers,
and going as far as we can. My plan is to get to early westward
exploration. This will be done with living books, very relaxed and
fun. Hoping to fit in many field trips! May also do some ancient
history using Story of the World I, as suggested in Home Learning Year by Year. - We never touched Story of the World. We covered basic early American History through Living Books.
On May 14th, we will celebrate the first annual Apraxia Awareness Day! The Childhood Apraxia of Speech Association worked hard to make this an official day recognized by the United States Congress. Several states have joined in to officially recognize this day as well. It's a very exciting event for those of us in the Apraxia community! Many people have never heard of Apraxia, and don't know about it, so it's a good chance to get the word out for these awesome kids.
Many people made a meme for their child, and I joined in as well.
This week has been a bit emotional for me. I am so very proud of the hard work that Luke has put into speech. We started 2 months before his 3rd birthday, and we are right around 1.5 years into therapy. In those 1.5 years Luke has gone twice a week, pretty much every week other than the occasional day off or yearly vacation. And not once has he ever complained. Not once! He is proud to go and do his big boy work as he calls it. He knows Ms. Ginny helps him to talk, and he will tell you that.
It's amazing to think that this time two years ago Luke couldn't say "hi". Luke had been in speech through early intervention for four months at that point, and he had made very little progress. I stumbled across an Apraxia website late one night while desperately searching or what would help him. I can remember reading the description of Apraxia to my husband, and knowing in my heart I was describing Luke perfectly. I also knew then that I HAD to find him the right kind of therapist, or we would continue to go no where with therapy.
Today Luke has made amazing progress thanks to a wonderful therapist and PROMPT therapy. At one point I proudly posted Luke's newest words and phrases on Facebook. As we went on, the new words and phrases started coming so fast that I couldn't keep up. When we started with Ginny, Luke had 10 words and/or approximations. Meaning Luke had his own way of saying most of those words, but most people outside of our immediate family wouldn't understand them. Today, I couldn't tell you how many words he has. And the vast majority are words that strangers would understand.
Luke still struggles. He gropes for sounds sometimes. There are times where he's talking, will pause, and you can see/hear him working on that next word. But my boy is determined and has never gotten frustrated. He works on those words until he gets out what he wants. He patiently repeats himself if needed until we understand. Motor planning is still a bit of an issue, but we're all working hard at overcoming it. Luke may have Apraxia, but Apraxia does not have him.
The last couple of weeks have brought some very sad stories in the news.
One was about a 19 year old college student, home for Spring Break. He ate a cookie that a friend offered him. This college student had peanut allergies, but felt the cookie was safe because it didn't contain peanuts. Unfortunately it did contain peanut oil, and the young man went into anaphylaxis. His mom could not find his Epi-Pen, and was only able to find one she had at home that had expired 2 months prior. The 911 dispatcher told her to NOT use the expired pen. The hospital staff was unable to save this young man's life, and he passed away. The mom is quoted as saying she did not know her son's allergies were life threatening.
Another involves a possible peanut reaction after eating at Chick-Fil-A. A 7 year old boy went into anaphylaxis after eating at Chick-Fil-A, though his parents did not know he had peanut allergies. This story is yet to be confirmed through autopsy and toxicology, but the hospital doctors felt he more than likely died from anaphylaxis.
My first thought was about the peanut oil.
So many times I have read that peanut oil is "ok" for peanut allergy individuals because it's so refined. The protein is essentially heated out. Chick Fil A even has a statement on their website stating that peanut allergy individuals are ok with peanut oil.
I've had people urge me to take Luke to Chick Fil A, saying I was being too protective. That it was fine.
My feeling was always, I don't care if they say it's ok. He will NOT eat anything that has the word "peanut" in the ingredients. Why would I take that risk? He's deathly allergic to peanuts, why would I play roulette in hopes that it would be ok?
As sad as the stories are of what these 2 children went through, it was a confirmation to me that my instinct was correct. It may be "ok" for some people, but to me it's not worth the risk. Would I went to risk my child's life for a chicken nugget? Definitely not.
Let this be an example of why people that do not live with life threatening food allergies should not try and influence those of us that do. It is easy to have an opinion when it doesn't personally affect you or your child, but that doesn't mean their opinion is correct, and definitely not welcome. Navigating serious food allergies is difficult, and scary, enough. Having people that really have no idea what they're talking about throw opinions in is unnecessary.