Superkids

Yes, I have a special needs child, who is one of three. Yes, my life is hectic and stressful and my to-do lists never seem to end. I have very little “me time.” My needs almost always come last and I’m generally exhausted. But my life is also beautiful and blessed and I wouldn’t change it. But I digress from my point, which is this: I am not a hero, I am not amazing, I am not incredible. I am just a mom. I am just doing the same thing any other mom would do if she were in my shoes. You don’t know how I do it? You know what? Some days I don’t either. You just do what you have to do. When you have 3 little people depending on you, you don’t have much choice. I get through the day the best I can. Some days I do better than others. Some days I have very little patience, and some days I am calm as can be. Some days I laugh, some days I cry, some days I scream. But I am not superhuman. Most days, I’m just doing the best I can. Every mom wants what is best for their child(ren). I am no different. It is not always simple to meet the needs of a special needs child or even a “normal” child when you have more than one, but that’s what mom’s are for. Taking care of our kids is what we do best. And that’s really the point – I am just a mom, doing the best I can and hoping that it is enough. I worry that I neglect Addison because Violet and Oriana are more vocal and mobile. I worry that I haven’t had the time to do therapy exercises with her or put her braces on. I worry because there are days I don’t get to sit and hold her and she likes to cuddle. I worry that I neglect Violet and Oriana because simply feeding Addison and giving her medications is so time consuming. She needs positioned, she needs to stretch, she needs her braces put on, she needs to do tummy time, she needs a lot. The vast majority of the time it feels like nothing in our lives is simple. Doing anything with three little ones in complicated. Plus, we have to time things around Addi’s tube feeds or take all her feeding supplies with us. She sees a whole team of specialists every three months, plus regular pediatrician appointments and weekly physical and occupational therapy. Like I said, the to-do lists never seem to end. But seeing that little girl make even just a little progress is totally worth it. Plus, there’s nothing better than when she looks right at me and gives me one of her rare smiles. Seeing all our girls grow from tiny little preemies to mostly healthy, and definitely happy, almost 2 year olds has been amazing. So, the point is, my kids are awesome and inspirational; I am not. I’m just hanging on by a thread, hoping to make it through another day. Don’t take this the wrong way; I know people mean well when they say these things. These are just some of the things that run through your brain when you hear theses phrases said all the time. I’m just telling you how I feel about it all. And it’s not me you should be in awe of.

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Here We Are Again…

Well, we didn’t get to stay away from the hospital for as long as we were hoping. We thought after Addi got her g-tube, we would get a nice reprieve from spending all our free time at Akron Children’s. But, the universe had other plans. I had some lovely respiratory issues last week (cough, tightness, congestion, fever). It took me about a week to get over it and I have been worried sick ever since that the girls were going to get it. (Can you say self fulfilling prophecy?). Addison was coughing a little bit on Monday and Tuesday, but nothing major and was otherwise acting fine. Wednesday, she started to go downhill. She was very congested, she was coughing a lot, and she was sleeping a lot. When she was awake, she was fussy (very unlike herself). Her temperature ran low all morning; she never runs very high, but it was low even for her. She looked pale and sounded like she was having a hard time breathing. So we decided to take her to the ER to get checked out. And it is a good thing we did. She was a little bit wheezy when we first got to the ER, but it seemed like the longer we were there, the worse her breathing was getting. Her oxygen levels started to drop a little bit, so they put her on regular oxygen. That didn’t really seem to help, so they decided to use vapotherm, which lets them control the flow and concentration of oxygen (right now she’s on 40% oxygen and 10 liters; I know that will mean something to some of you). They did a chest x-ray, blood and urine cultures, and swabbed her poor little nose for every respiratory virus in the books. Since she required so much oxygen she got to be admitted to the ICU instead of a regular floor. She had her whole ER team worried for a little while.
The chest x-ray suggested that she might be in the very early stages of pneumonia. Her flu and RSV swabs were negative. Her urine looked good. They think she probably just has some type of viral infection. With all her chronic problems, she doesn’t have a lot of reserve left over to fight it off. So, we are basically just doing supportive care to help her through it. She’s on IV fluids, an antibiotic, a steroid, and an albuterol inhaler. They are not feeding her right now. At this point, it is kind of a wait and see what happens situation. The doctor said it is possible that this will be the worst she gets and it is also possible that she will get worse before she gets better. He said these viral illnesses tend to peak around day 4, and we are just now going into day 2. Hopefully, she doesn’t get much worse. I would hate to see her on the ventilator again. This vapotherm is causing enough flashbacks to our time in the NICU as it is. She had a fairly quiet night and was able to get some rest. Her breathing was up and down through the night. She will have a few minutes where it is normal, and then it will go back to rapid and labored again. At least she was able to rest, and she seems to be holding her own so far. We will see what today brings. I definitely see lots of coffee in my future. Thank you all for all the thoughts, prayers, and positive energy being sent our way. I’ll let you know how things are going later today.

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Addison Update (March)

Addison has seen all of her specialists over the past few weeks; it has been a little busy on the appointment front. The good news is, we don’t have to see any of them again for 3 months, so hopefully it will be relatively calm until June. Here are the most recent developments:

  1. Gastroenterologist: The GI doctor and nutritionist were pleased with Addison’s growth and weight gain. We ran out of her reflux medication a couple of days before the GI appointment, so we decided to just discontinue it. Addison has not thrown up a single time since she started her seizure medications, so we don’t feel that reflux is a major problem for her anymore. She has had no problems with reflux since stopping the medication. I am all for having one less medication to give and refill. Plus, it was not covered by our insurance, so it was pretty pricey every month. They decided to increase how much formula and water Addison got each day, so we had to adjust to a new feeding schedule. She now gets 3 bolus feedings during the day. Her feeding still runs over night, it just runs a little bit faster since it’s a larger volume. My main question was whether or not we could try bottle feeding again. It has been so long since she took anything by mouth; I was concerned about her forgetting how to eat orally. The GI doctor said it was ok to try bottles and see how she does. She didn’t feel that a repeat swallow evaluation was necessary because Addison is developmentally much the same as when the first one was completed. Let’s just say, she did not get any better at eating out of a bottle!
  2. Physiatrist: My list of concerns to address with the physiatrist boiled down to a few main things this time: 1) Addison’s hamstrings have been especially tight, which we have noticed in PT a lot, 2) along with that, she has a lot of spasms in her legs, and 3) attempting to feed her out of a bottle was not going well. He decided to increase her baclofen (muscle relaxer) just a little bit. His concern was that the baclofen can make her more likely to have seizures. We knew that she could tolerate 5 mg three times a day very well, but you never know how it will go when the dose is increased. He considered starting her on a different medication (like valium) in addition to the baclofen, but we decided that the best course of action would be to see how she did with the increased dose first. If she doesn’t tolerate it, then we will have to lower the dose back down and add an additional medication. So far, she has done ok. He gave us a referral to see speech therapy again; hopefully they can help us figure out how to help her drink from a bottle this time. He also felt that she needed a splint that helped hold her fingers out straight. She currently has hand splints that just hold her thumb out, but they just aren’t quite enough. Our OT measured her for the new splints last week, so hopefully these ones won’t take two months to get here like the last ones. He also ordered her AFO’s to hold her ankle and foot in a neutral position, which should help the spasms in her legs. They came and did casts of her legs in PT this week, so those braces are in the wir
  3. Surgery: Addison had her 6 week post-op follow up at the G-tube clinic. They measured her to make sure her tube was still the correct size for her, and then we changed it for the first time. She had no problems and they said her site looked great.
  4. Neurology: Addison had another EEG and appointment with her neurologist. The EEG techs say she spoils them because she’s so good about getting all the electrodes put on. Her neurologist said her EEG was stable, no major changes from last time. He feels that her seizures are controlled (and I agree). He did not change any of her medications, and when we see him in 3 months, we do not have to get an EEG!
  5. Eye Doctor: Since Addison is on Sabril for her infantile spasms, we have to follow with an eye doctor every 3 months (because a side effect of Sabril is vision loss). She has been looking around a lot more, making more eye contact, and tracking things a little bit better. Her eye doctor agreed, so we do not have to do any further testing, unless we notice any changes. So far, she has improved with her vision and development since her seizures are controlled.

It is kind of nice to get all the specialist appointments out of the way within a two week time frame. We did not find any major issues or concerns; it is awesome when we just get to keep doing what we are doing. It is nice to feel like Addi is making some progress for a change!

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Things I’ve Learned as a Special Needs Parent

I have been contemplating the journey that we were thrown into thanks to having a child with special needs. It is not a journey that I ever thought I would take. It has been a journey of contradictions. It has been: frustrating, sad, challenging, joyful, rewarding, and exhausting. I will always wish Addison was perfectly healthy just for the sake of her life being easier, but this roller-coaster we are on has taught me a lot. I’m sure there are many things I have yet to learn and discover. Over the past 18 months, these are some of things having a child with special needs has taught me or I have experienced:

* To stand up and fight for what is best for my family/child. Healthcare providers are a great resource and very knowledgeable, but it comes down to this: you are the one that takes care of your child day in and day out. You are the one that lives your life. You know your child best and you know what will work for your routine. Don’t be afraid to say no to something that is not reasonable for your family/child.

* This point goes along with my last one: if a doctor or other provider is not helping you, find someone who will. If you feel like you are not getting the right answer or making any progress, get a second opinion. You shouldn’t have to fight so hard to get your child what he/she needs (but, unfortunately, you frequently will). Explore other options. There are a lot of excellent doctors out there, but there are also a lot of not so excellent doctors out there. I fought Addison’s GI doctor for months about her feeding issues and never made any progress. I started to question myself; maybe I was making mountains out of mole hills. But I asked her rehab doctor for his take on the whole situation, and he assured me that I was not crazy and gave us a referral to a different GI doctor. It took one appointment with the new GI doctor, and we were scheduled to get an NG tube, as the first step on the road to a g-tube. After fighting and fighting for so long and not making any progress that seemed far too easy. However, the reality is, it shouldn’t be that hard. So again, do not be afraid to fight for something you know your child needs. Never stop questioning and never assume that you are wrong and someone else is right.

*I have found strength I did not know I had. I have watched my child go through more in her short life than most people have to experience in a lifetime. In 18 months, she has already had 3 surgeries, spent her first 4 months of life in the hospital, been hospitalized five times since being discharged from the NICU, had multiple radiology and lab tests, and more doctor’s appointments than I care to count. While taking care of NG tubes is something I do frequently as a nurse, it was another thing entirely to have to put one in my own child every week for five months. I will do whatever it takes to make her life better and to get her what she needs. I will get through it and I might come out the other side a little broken, but I will survive. When you’re a mom, you don’t have the luxury of lengthy breakdowns; you have little people depending on you, so you have to pull yourself together and get through the day somehow.

*I have no idea how anyone could think that our little peanut is not absolutely perfect. Because she is. She is 18 months old and her development is that of a 3-6 month old, but in spite of (or maybe because of) her problems, she is perfect and beautiful to me. So she’s not everyone’s idea of the “perfect” baby. I don’t care, she is perfect to me.

*You will become best friends with Google. Every time you get a diagnosis or a new therapy is suggested, you will immediately turn to your trusty friend Google to look up anything and everything about it. You will educate yourself so that you can make a good decision for your child. You will quickly become an expert on your child’s condition and the available treatments. It is one of the few things you can do to make yourself feel like you are in control, so you will spend hours in front of your computer.

*Some days are good, some days are bad. You learn to roll with the punches. You rejoice in and celebrate the good days. You push through the bad days, and hope that the next day is a little better. You do the best you can and you try to remember that you are doing your best, and your best is enough.

*You never stop trying to solve problems or make your child’s life easier. Ok, we got rid of the NG tube, and got the g-tube, great! Now, let’s move on to trying to bottle feed again. There is always another step to take and something to try to improve your child’s quality of life. And as a parent, you are always looking for what is next and what you can do.

*You will frequently feel like you are failing. I feel like I am not doing enough to help Addison all the time. I feel like I should have done more exercises or more therapy with her or I forgot to put her hand splints on. I feel like I’m not paying enough attention to any of the girls. You’ll feel like you neglect your “normal” children because you have to spend so much time focusing on the one with special needs. On the other hand, sometimes I feel like I neglect Addison because Violet and Oriana are so demanding of my time and attention; they can walk and are starting to talk and Addi can’t do those things to demand my attention.

*If you’re like me, you will spend a shocking amount of time trying to find someone to watch your other children, so you don’t have to drag them all to doctor’s appointments. Sometimes, you will have no choice but to take everyone along. You will quickly learn to stop apologizing to everyone for this; it’s just a fact of life. Babysitters don’t just appear when you have a baby.

*Getting away is a challenge. It’s one thing to leave your kids with grandma, it’s a whole different story when one of those kids is tube fed, takes a bunch of medications, and has seizures. It’s not so simple to get away. It takes a lot for special needs mamas to feel comfortable leaving their child with someone else. Addison is not a typical 18 month old at all, so the instructions and education it takes to teach someone else how to fully care for her are lengthy and overwhelming. And if you do finally reach a point where you feel you can leave your special one with someone else, you pretty much write an instructional manual on how to take care of him/her with a trouble shooting section included.

*Some days, you will feel sorry for yourself and/or your child. Having a special needs child is hard, it’s that simple. You’re allowed to feel stressed and overwhelmed and like you can’t do it anymore. Simply put, you are human, and we all feel this way at some point. The important thing is that you don’t dwell. Mourn for your social life, your baby’s challenges, the loss of your idealistic normal, and then move on. Get back up and keep going. Don’t beat yourself up for feeling down. Feel what you need to feel, and do not feel guilty about it.

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The Patient/Family Side

I get to experience the healthcare provider part of the hospital all the time, but having Addison in the hospital the past few days has really got me thinking about the patient and family experience of being hospitalized. We have mostly had fabulous nurses. I could tell that they truly cared and they did everything they could to help make our stay more comfortable. We also had a couple not so great nurses. There was one who didn’t even acknowledge me the first time she came in the room after I arrived for the day. There was another who assured me that she was “keeping an eye” on Addison’s monitor from the nurse’s station, but didn’t set foot in the room for two hours to actually check on Addison when her heart rate was low after being sedated for an MRI. When I mentioned Addison’s NG tube needed retaped since they don’t usually change them in the hospital unless they get pulled out, she promptly informed me that there was tape over on the counter and left the room. Now, I am more than capable of retaping and repositioning her NG since I do it ALL THE TIME at home, and have for the past 3 months. But, I was utterly exhausted and it would have been nice to not have to fight my 14 month old to get her NG positioned properly and taped well. I would have at least appreciated an offer of help. I guess the point is, it is so very important to consider what our patients and families might be going through. It especially important when you work with children. (Also with adults, but it’s a bit different). For example, let me tell you a little about the last few days. Thursday morning, Addison had PT and OT. We were home for a couple of hours, and then I brought her to Akron for her EEG. Friday morning at 9:30 am, I got a phone call from her neurologist telling me to bring her to the hospital to be admitted because of what they saw on her EEG. I had just finished feeding Violet and Oriana and was in the middle of eating my (super gourmet) breakfast of cereal. I then spent the next 30 minutes on the phone, calling Ryan and trying to find someone to watch Violet and Oriana, while running around attempting to pack bags for Addison and I and get dressed, and keeping an eye on the girls. We were at the hospital by noon, I spent the night Friday and spent all day and night Saturday with Addison. I went home Sunday afternoon so I could see Violet and Oriana for a few hours, shower, and attempt to get a few hours of sleep before working midnights. Monday morning, I got home from work and spent the morning with Violet and Oriana. I slept for an hour and a half while they napped. Then I packed them up and brought them with me to the hospital because Ryan was at the hospital with no car and we had no one else to watch the girls. So he took them home and I stayed with Addison until my Mom came to pick me up after work and took me home. I got to sleep in my own bed Monday night (which was wonderful, by the way). Then I was back at the hospital on Tuesday by 11:30 am and spent the rest of the day and night. Let me also mention that I spent a couple hours Saturday afternoon on my phone, calling and texting so many people to arrange for someone to watch Violet and Oriana Monday and Tuesday. I am tired. I am stressed. I am overwhelmed. I am missing my other children. I am missing my husband, because for the past five days, we have pretty much only seen in other in passing. I have slept in my own bed one night out of five. I am worried about my child. I am sick of hospital cafeteria food. My life doesn’t stop because my daughter is in the hospital. I still have to work and pay bills and make sure my family is taken care of. So if I’m a little snappy or unfriendly, I’m sorry. You aren’t really seeing me at my best. I’m trying my hardest and doing the best I can. But I am stretched about as far as I can go. So be just a little patient with me. Ask if I’d like to re-tape that tube or if I’d like you to do it. Remember that I am only human.

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And Suddenly…Toddlers!

It is a strange and amazing thing to watch your kids grow up right before your eyes. Sometimes as parents, you don’t realize it right away. You spend every day with your children, so all the little changes aren’t so obvious. I see all the different things the girls do and how they grow, but sometimes it hits me all at once just how much they have changed. It just recently hit me: we had these little babies just learning how to stand and take steps, and now, suddenly, we have two toddlers running around the house. I swear they went from babies to toddlers in a matter of days. Even their looks have changed; they look more grown up. Comparing their pictures from a few months ago to how they look now is such a huge difference. These girls can stop growing at any time!

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This is my rocker from when I was little that my Mom got out and cleaned up. Violet & Oriana LOVED it!

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And this is Addison making a grumpy face about going to doctor’s appointments today. But, seriously, how cute and grown up does she look in this outfit, with her tennis shoes on?!

 

Our little ladies are now 18 months old (or 15 months corrected age). Violet and Oriana are walking like old pros. When they get excited, they practically run. For being such skinny little ones, they eat a ton! Violet especially loves food. They eat everything I feed them, and then they eat half of my food too. They are finally starting to get the hang of sippy cups; Violet does really well. We haven’t been able to get away from the bottles at mealtimes yet, but the rest of the day we do sippy cups. They eat all kinds of finger foods and whatever food we eat that they can chew. They love books. Oriana loves stuffed animals. Violet still loves blankies. Violet also loves to take the dogs potty. Ryan or I have to hold her, and then she has to hold the leashes. As soon as we move towards the door with the dogs, she makes a beeline for it. (Now if only that enthusiasm would last for the next 18 years…). They are both becoming cuddlers. We have had some rough nights and days thanks to teething lately, but it seems to have let up a little for the moment, and I am super thankful for that. One teething baby is no fun, two is definitely a challenge. Violet and Oriana still don’t say many words. They are starting to get into the mimicking phase though and they make all kinds of sounds and do the whole nonsense baby talk thing. They also point and grunt at everything, which is really lovely (yes, that’s definitely sarcasm). They are getting there. I’m sure some day I’ll be wishing we could go back to the days when they couldn’t talk.

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Oh, Hi Mom, did you need your debit card?

They like to do somersaults - they do this and then we flip them over.

They like to do somersaults – they do this and then we flip them over.

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Oh, you know, just lounging around, eating cheerios and sharing with the dogs.

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Addison has been doing great! We love, love, love having the g-tube. It definitely makes her life and ours easier. She is growing like crazy. I think she gets taller every day. She still has an occasional seizure, but they are much  more controlled. She has been doing awesome in physical and occupational therapy lately; it is so nice to finally see her making some progress. She has much better head control, she is holding her hands open more, she responds to my voice a lot more, she moves her arms much more, she stretches a lot, and she tries to sit up from a reclined position. We go to get her g-tube changed for the first time this week. We have several other doctor’s appointments coming up soon too. I am slowly working her up to getting her daytime feeds done in an hour. We used to have to do them over two hours back when she was throwing up so much. Since she’s not been vomiting, I have been increasing the rate they run at by a little bit every week. Right now, we are up to about an hour and fifteen minutes. Addison has a great little grin, when you can coax it out of her. She still doesn’t coo very much. She is super content, and of course, she still loves to snuggle up and get her fair share of the cuddles.

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Cuddling with Jackson (he really just wanted her blanket).

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It’s been a challenge lately to feel like I’m spending time with and paying attention to all three girls. Addison tends to get a little neglected during the day, because Violet and Oriana are so insistent on having all my attention, and I can’t always get them to behave so I can hold Addison. It is great to be able to lay Addi on the floor, and not have to worry about the other two pulling out her NG, but they just kind of crawl all over her now. They don’t yet understand that they need to be gentle with her. They pull each other down and climb all over each other, so they think they can do the same to Addison. Poor baby gets beat up sometimes. She does love to watch her sisters though. All in all, it has been a pretty normal couple of months, which has been a nice change of pace. 

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Home Again, Home Again

Quick update: Addison got to come home today. We got to stay in the hospital one more night than planned. That extra night just ensured that she was tolerating her feedings. By the time we were discharged, she had 24 hours of feedings under her belt. She did great with her food. No problems at all. She was in a lot of pain the day of her surgery, but she started taking Tylenol on the day after surgery and that’s what we are still using. She’s a champ; she had Tylenol twice both yesterday and today. I think that’s pretty good considering she had surgery two days ago. She’s a tough nut to crack (ahahaha, because we call her peanut, get it?). {Side note, I might be a little slap happy and tired from working four out of five days before surgery and sleeping on a hospital pull out bed for the past two nights. And, you know, stress.} Anyways, Addi is doing great. Her g-tube site looks perfect. She has had zero problems with feedings. Her pain has not been difficult to control. All in all it was a smooth surgery and recovery and we are very thankful for that. It is nice for all of us to be home together. I hadn’t seen Violet and Oriana since Tuesday night. I think Addison is happy to be home as well as she’s currently passed and snoring a bit in the pack-n-play next to me. We go to get her g-tube changed for the first time in 6 weeks and I think we are supposed to follow up with the surgeon in about 4 weeks. Thanks again for all the love!

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She was full of smiles the past couple of days.

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Ryan will be mad that I posted this. He’s always yelling at me for taking pictures of him sleeping with Addi, but I can’t help it. They are just so cute when they are both passed out.

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Oriana – 17 Months

Our little sunshine baby has finally started feeding herself. Oriana took her sweet time to start doing so, but she’s got it down. She is walking all over the house. She has always had really good balance and that helped her out a lot. She walks around the house and talks (and eats, if she’s having a snack) all day. She is also finally off formula completely. She’s going through a bit of a Violet phase in that we sometimes have to bribe her with puffs to get her to eat her actual food. She loves stuffed animals; she hugs and cuddles them and it is the cutest thing I have ever seen. She always takes one to bed with her. Oriana has started to figure out that cuddling is not so bad. She likes to sit and rock and lay her head on our shoulders. There’s nothing better than baby cuddles. Oriana babbles all the time. She’s not doing a lot of real words yet, but I’m sure it will be soon. She does lots of dada and some mama, nana, and baba. She really sounds like she’s trying to say something sometimes. I have no idea what that something is , but it definitely sounds serious. She still thinks that music and dancing are pretty great. She has also been very into reading lately. She will bring me a book and demand that I read it to her multiple times. All in all, Oriana’s doing great and she’s right on track developmentally for her corrected age. She’s such a sweet girl.

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Walking around, eating Cheerios

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So sassy

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Silly sideways baby

 

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Violet – 17 months

I’m fairly certain it was just about forever ago now that I promised individual updates on Violet and Oriana. I’ve taken a bit of a break from blogging; I just didn’t have the energy or motivation. I have recharged my batteries a bit and am ready to dive back in; I’m hoping that lasts. So, Miss Violet. She has just started standing without holding onto anything over the past couple of weeks. Over the past few days, she has taken three or four baby steps without holding onto anything! For the most part, she cruises around the house holding onto anything she can reach and if she really needs to move fast, she crawls. The girl can stretch out and reach just about anything she puts her mind to, which is fun (for example, I looked away for a minute the other day to check on Oriana, and Violet managed to reach up and pull my bowl of tomato soup down all over herself, me, and the kitchen floor). In December the pediatrician gave us the ok to get Violet off formula. Violet prefers actual food anyways, so she has no complaints in this department. She can use a sippy cup, but she still prefers a bottle at mealtime. If you attempt to give her a sippy cup at meals, she will promptly throw a fit because we drink from bottles with our meals. She’s perfectly happy using a sippy cup for snacks and the rest of the day though. She still loves anything she can feed herself. I have attempted to let her use a spoon a few times; she’s not quite there yet, but I imagine she will be absolutely thrilled once she figures it out. Violet’s got a great giggle and smile; she thinks she’s hilarious most of the time. She loves to squeal. She babbles quite a bit and says dada and mama and occasionally a baba. She loves to play peek-a-boo. She hates wearing shoes, she immediately starts taking her shoes off the second I turn away. Ryan says she is more and more like me every day. Sometimes, it is so strange to have this little person that looks so much like me and sometimes acts so much like me. Generally speaking, she’s doing great; we just recently had a NICU follow-up clinic appointment and they had no concerns about her development. Her big attitude in such a little person is a bit of a challenge some days, but she makes up for it with her adorable smile.

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Christmas Eve. She looks totally unimpressed.

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Being silly. I put that bucket on her head once, and now she does it all the time.

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That smile is the best. Straight up ornery.

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Addison got her G-tube!

I’m sure most of you know, or have seen, that Addison finally got to have surgery to get her g-tube. We could not be more excited to be rid of the NG tube! The NG tube was supposed to be a two month process and it turned into a long, drawn out five months. We finally made it though. Addison was able to see the surgeon that did her previous two surgeries, which made us feel much more comfortable with the surgery. We absolutely love (and trust) Dr. McCollum; he saved her life when she was in the NICU and that’s not something we will ever forget. Addison’s surgery was scheduled for 7:30 this morning (which means Mommy and Daddy had to get up at 4:30, bleh). Surgery went well; it actually ended up being the best case scenario – he was able to do it laparoscopically (smaller incision!), and even though she had a lot of adhesions, they were not in the way. Surgery only took about 45 minutes. We will be staying overnight to make sure her g-tube is functioning properly and to learn what we need to know to take care of it. She’s doing well. So far, she has been in a lot of pain. She mostly slept until about half an hour ago and then she woke up crying and had some spasms and tremors. She’s not due for more pain medicine for a little bit yet, but Daddy’s holding her and she’s no longer hysterical. Hopefully it will help when they get her muscle relaxer ordered and given, since she hasn’t had a dose yet today. I hate seeing her so uncomfortable, but hopefully as the day goes on, she will feel better. It is nice to see her face without the NG tube and all the tape! Thank you for all your thoughts, prayers, and wishes for things to go well. I’ll let you know how things are going again tomorrow.

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Selfie before she went back for surgery.

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Last picture with the NG tube!

Posted in Addison, Our Journey, Weekly Update | Leave a comment