The last two months have been eventful and full of great growth! Makenna has learned so many new skills and her determination amazes us everyday!
One of the biggest area of improvement has been in her gross motor skills. She has figured out how to cruise furniture, can lower herself into the seated position, and can pull herself into the standing position (while holding on) on a few select items around the house. When she is scooting she has also started to put her hands on the ground and bare weight at times, as if she is trying to crawl. Another exciting thing she has been doing is sitting up from a laying down position on her own. She has been able to do this for a few month, but until recently she would always get so frustrated she was laying down that she forgot she could sit herself up! She also can take a few steps while holding onto her push toy and a lot of steps if we hold her hands or under her arms. She also learned that she needs to roll on her belly and slide off of furniture to get down. Sometimes she has a little trouble with the execution and wants help, but she definitely knows what she needs to do now! In general she just seems less afraid of getting hurt and more willing to try new things or take chances. Every now and then she still stumbles a little (without falling down) and bursts into tears. The idea of falling or the feeling of not being totally stable still really freaks her out. In general though she is more daring and using her body a lot more. 
The other huge area of improvement lately is her vocabulary! Makenna now clearly and correctly says over 85 words. She will have simple conversations with us and answer questions. For example, one day she scooted to me and said "up." I picked her up and she said "more" I said "more what?" and she said "books" and pointed to her book cabinet. She loves naming things she recognizes (owls, keys, phones, lights, baby, etc) and uses words to ask for things she wants (juice, eat, markers, walk, fork, up, down, cracker, snack, night night, etc). She uses words to tell us when she is "all done" or wants "more" and also uses words to identify people she recognizes (mommy, daddy, papa, and grandma). She says "thank you" (usually without prompting) when we give her something, "oh no!" (While putting her hands on her head) if something crazy happens, "aw man!" if something is disappointing and "yay" (while clapping) if something is exciting. She also understands just about anything we ask of her or say to her. 
If we ask her where something specific is located in her environment, she will point or look at the correct object, even if it is obscure. If she is in the mood, she will follow simple commands (go in the box, look up, take a bite, hug the baby, blow a kiss) or retrieve/hand over objects when asked. She says "no" if she doesn't want something and loves replying "maybe" when asked a questions. Also if we say something to her, she loves asking "why?" and genuinely wants and waits for an explanation. She says "cheese" when we hold up at camera, "stop" if we are bothering her, and "down" if Sadie tries to jump up on her while eating. She can identify just about every body part, including less common ones like thumb, tongue, knee, elbow, and teeth as well as articles of clothes (shirt, dress, sock, shoe, bow, pants, undies, etc). She also has begun learning her shapes and will correctly identify circles, squares, and triangles when asked and she knows several animal sounds (moo, woof, meow, quack). This month when I was leaving the room I said bye to her and she said "Bye! Love you" and when we were leaving a hotel room I told her to tell the room bye-bye and instead of saying bye, she said "See you later." She still loves music and books, so she definitely gets a lot of exposure to language. I just love it! She is a talkative and very social, outgoing little girl! She wants to play with everyone and be everyone's friend. Everyone always comments on how verbal and precocious she is. She just makes everyone smile and is a great reminder that life truly is what you make it! She may have been dealt a difficult hand, but she is a happy, funny, and vibrant through it all!
Her fine motor skill development has slowed down the last two months while her gross motor and vocabulary took off. However, she has begun doing simple shape puzzles, she loves drawing with crayons, and she is getting a little better at eating with utensils. She demands a "fork" at every meal, so she is motivated to practice. So far she still has trouble scooping, but can get it to her mouth once the food is on it. She still refuses to stack blocks, but she loves putting lids on water bottles and containers. She is likes playing in the Pyrex cabinet and is actually pretty good at figuring out which size lid goes with which container! She also knows the purpose of many common items (phones to ear, hat on head, shoes on feet, brushes hair, glasses on face, etc.) and she is learning to pull her undies up on her own (kind of tricky since she can't stand up on her own yet).
The main struggle this month has been with food and drinks. Makenna still has a lot of texture/sensory issues when it comes to food. She doesn't like anything sticky, slimy, or wet. She doesn't like her food to touch...she hates dips, sandwiches, or mixed veggie type things. If you try to sneak anything into her rice she will literally pick out ever last piece. She is also very picky about not wanting the same foods more than once every few days, so a food she loves for dinner, she will absolutely refuse to touch at lunch the next day. However, if we find the perfect foods for each meal she will eat great. Best of all, she loves healthy foods! Salad is a definite favorite as well as pizza with tons of veggies (no cheese). She also loves avocado, broccoli, rice, watermelon, most meats, and quinoa. She doesn't like junk food. Drinking remains a nightmare. She refuses to drink out of any cups or bottles most of the time. On a good day will take a few sips (totaling less than half an ounce) and she still tends to choke when drinking fluids, no idea why. She still only wants to nurse. Unfortunately, nursing just isn't going to be an option forever and I can tell it isn't enough to satisfy her at this point. It is a constant source of stress and a battle everyday. Worst of all because she isn't drinking/eating enough during the day she is waking up wanting to nurse as many as 10 times a night. Even when she doesn't get what she needs, she still refuses to take bottles/cups. I really don't know what to do and none of the experts do either. Everyone says it is behavioral, and I know it is, I just don't know how to change it.
We met with a great nutritionist this month to discuss everything because she has only gained 14 ounces in 8 months. They said they want CDH babies to be in the 30th percentile because the more they weigh the harder their lungs have to work. Makenna is currently in the 30th percentile now (she was on the 70th at 12 months old), so they are thrilled with her weight and not concerned that she thinned out. They just want to make sure that she doesn't continue to fall percentiles. They want her to gain appropriately and maintain the 30th percentile from here on out. To do that he wants us to start fortifying her food with coconut oil and avocado. He said that way even if she doesn't eat much she is still getting some extra calories.
Medically we had quite the scare this month. On May 13th at 4:30pm she started throwing up with no signs of a fever or illness what-so-ever. After the sixth time in an hour we raced her to the hospital for fear of a shunt malfunction. They agreed it looked like a classic shunt malfunction, but since they weren't qualified to care for her, they decided to send us back to Shands. They did some blood work to rule out infection and hooked up an IV for fluids. Due to the time of day and nature of her condition it was decided that Makenna would be best off taking a jet. We waited for a couple of hours. By the time the ambulance arrived (10pm) to take us to the airport, she had thrown up over 20 times and was exhausted. Once at the airport she and I were loaded onto the jet and headed for Shands. It was her first ever ride in a plane. It only took 53 minutes to get there and then we had to take another ambulance to Shands. We got to Shands at 1am and they did an MRI, an x-Ray to check the shunt tubing in her belly, more blood work, another IV, and a shunt tap. For the shunt tap they had to stick a thin needle through her scalp and into her shunt (while she was awake). They took out some of her spinal fluid to check for infection. Thankfully the MRI showed her ventricles were slightly smaller than before, her shunt tap was clear of infection, and the shunt tubing looked good. They did another X-ray to check for a bowel obstruction and a urine test for a uti. Thankfully this time Makenna is potty trained so the urine test was way less traumatic! All in all everything kept coming back negative for issues. From 1am-8am we were in the ER while they ran the tests. We were all exhausted from no sleep and every time anyone entered the room Makenna got so scared they were going to mess with her again that she would cry if they looked at her and throw up if they got close to her. By 4am we were up to 30+ throw ups and they decided not to allow her to nurse anymore in order to give her belly a rest and incase surgery was needed. Great in theory, but nursing is her primary source of comfort. She doesn't take a paci or have a special blanket/stuffed animal. She was scared and wanted to nurse. It made her upset that she couldn't and it got her even more agitated than she already was. At 8:30 they decided to move her to the pediatric floor and put us impatient. This was nice because she was finally able to snuggle up in a bed and rest without being messed with as much. They still came in every 3 hours for blood pressure/temperature checks. Every time they did, she would see them and get so upset she threw up. After the first 12 hours we requested that they please stop taking her blood pressure. She was so worked up that the numbers weren't accurate anyway. On day two of her stay the poor girl developed a nasty cough and her voice was so raspy she could barely talk. It was really pitiful. They decided she just had a stomach virus and her voice was raspy from all the crying and throwing up. After four days we were allowed to leave! Unfortunately I got sick in the hospital and the day after we got home (Sunday) we discovered I had an upper respiratory infection. I was coughing and sounded raspy just like she did, so Monday we took her to the pediatrician. I was afraid she would have something in her lungs, but it turned out she tested positive for strep throat instead! Poor baby! We aren't sure if she had this the whole time or if it was picked up in be hospital, but she got an antibiotic shot and was all set! A week later she was still coughing and developed congestion. I brought her back to the pediatrician and we discovered she had a sinus infection and an ear infection! What a crazy month!! Makenna had never been sick in her life (well besides the whole CDH/hydrocephalus thing). Never even had a runny nose! Although in three weeks she had a stomach bug, strep throat, a sinus infection, and an ear infection! What can I say...she is all about doing things with a bang!!
This month we also did her follow up skin test for allergies. It was definitely much better than the first and her back didn't have big welts this time! It was so great to learn she has begun growing out of her allergies. She use to be allergic to corn, dairy, soy, eggs, carrot, apple, and wheat. Now she is allergic to dairy, soy, corn, and dogs (a new one!). Although the first time we tried giving her egg yolks and she broke out in a rash. They want us to hold off introducing the foods again until she has a blood test for the allergens to be extra safe.
Final medical thing this month is that we switched her to a new reflux medicine (again!). The first one (Pepcid) didn't work, the second one (Prilosec) was too expensive, third one (Nexium) made her stop eating, then we went back to Prilosec, and now we've settled on Protonix, which has been working great! Hopefully it continues to do a good job!
Height: 32 inches
Weight: 21 pound 14 ouncesEyes: Brownish-green
Hair: Light brown, getting curly, and still shockingly long!
Clothes: 18m and 2T.
Diapers: Potty trained!
Food: Still loving her mommy milk! She also likes noodles, meat, pizza, rice, pea crisps, salad, and quinoa
Sleep: Still getting up many times a night.
Shoes: Just barely fits size 3 shoes.
Favorites: Makenna loves markers/crayons, ducks, Frozen (Anna), keys, remotes, Mr. Potatohead, her Dr. kit, and books!
