Welcome to Julia's journal and picture page. This site will keep you updated on all things Julia. We'll also post lots of cute, cute pictures. Thanks for checking in. To read about Julia's journey from birth to 10 months, visit http://www.caringbridge.org/visit/juliathomasbrooks.
Well the little lady is asleep early tonight, so there are actually a few minutes of extra time to try to put together an update. A lot has happened since our last update in April. Some of this might be repetitive for folks on Facebook or the various listservs we frequent, but we’ll try to get it all out here anyway.
Julia started receiving a blended diet (Stage 2 baby food, juices, formula powder, etc) about the time of our last posting. To our great surprise, the vomiting and reflux troubles she was having switched off like a light almost immediately. We’d heard from several other parents that they’d had success with the switch to a blended diet, but never figured it would be that quick. With the vomiting gone, J’s mood improved significantly. Needless to say, those were halcyon days- we got to sleep through the night (no overnight feeds), J was in a better mood, and we could get more therapies and exercises done during the day. Around the same time, we were connected with another home health nurse for childcare. Finally, we hit the jackpot. Miss Jamie is a dream. She’s dependable, smart, conscientious, and really cares for Julia. She has been involved in her therapy sessions, gives feedback to us and the therapists, and keeps Julia active and engaged throughout the day. She’s also been working on the days that Kelly is home to assist with getting Julia to various appointments and allow Kelly the time to make phone calls and set up other activities.
Speaking of activities, Julia has a new one- walking. As some of you saw on Facebook (and hopefully I can figure out how to post it here), Julia has a piece of equipment called a gait trainer that she really enjoys. It is very similar to a walker except more clinical-looking. Miss J is ready to roll and has been reveling in the freedom of movement. The gait trainer that we have is a loaner from the equipment company until ours arrives. The one ordered for Julia is a different model and one that the therapist likes better, but for now she is enjoying the loaner.
Teeth, teeth, teeth. The last few months have seen a bumper crop of teeth arrive, too. Two front tops, one front bottom and at least four other back teeth have worked their way in. Because she doesn’t chew on anything, Julia has a harder time with teething. She has nothing to relieve the pressure and allow the teeth to break through. Consequently, she has had some serious bouts of fussiness.
In May, we were planning to go to Cincinnati Children’s Hospital for some tests. Unfortunately, J came down with a virus and we had to reschedule (we’re headed there later in August). Little did we realize that the virus and subsequent problems would have J in the ER and laid up for the next seven weeks. We took her to the ER after her temperature spiked to 106 degrees. She was given fluids and antibiotics and had some X-rays. The doctors felt like the X-ray showed a very small pneumonia (the radiologist disagreed), so we treated accordingly. The illness lingered for over a month longer. With it came increased secretions (along with the teething) which brought the return of vomiting/reflux. Needless to say, we were very disappointed to have that duo back. We tried everything we could think of and about 50% of the Rite Aid pharmacy to try to get her better, but because of her situation it takes her a lot more time to get over illness, especially respiratory illness. The vomiting and reflux also caused us to cut back on feeding therapy until J got over those issues. We were also not happy about that, but J was probably thrilled.
Being the amazing little girl that she is, sickness didn’t stop Julia from achieving some milestones. In late April, she began transferring objects from one hand to the other (left to right). The high muscle tone that comes with J’s form of cerebral palsy makes gross and fine motor skills difficult. In J’s case that is especially true with her upper extremities. J’s PT and vision therapist work together once a week. Because of the progress she was making and need to get in more fine motor work, we discussed the possibility of the PT coming an additional day through the summer. Luckily, we were able to coordinate that through Early Intervention.
Julia saw her neurologist in May (more about him later) as well as her ear, nose and throat doctor. J has always been a big snorter and snorer, so the ENT thought we should conduct a sleep study to see if apnea might be an issue. She also felt that J’s overall condition had improved relative to the pooling of saliva in her throat and the red puffiness caused by reflux that she saw at the last visit. J’s swallow looked good even if it wasn’t 100% effective. That showed in other areas, too, as J took some “tastes” of food in feeding therapy. We also took a shot at discontinuing one of her medicines. This particular one coats her stomach (almost like Pepto) to soothe any irritation (recall that she had some gastric bleeding from an ulcerated piece of tissue in her stomach). Unfortunately, that suspension didn’t last long and we had to return to the medicine because we saw some indication of gastric bleeding again.
Recent weeks have had us trying to solve the mystery of the continued retching and vomiting (bet the Hardy Boys or Nancy Drew never tackled that one). J continues to do it despite being over her sickness. The culprit seems to be lots and lots of mucus in her head that causes her to gag, then retch, and then vomit. She was previously tested for allergies and none were found other than a slight allergy to bananas. Consequently, the mixture of her blended diet had diversified in subsequent weeks. We’ve monitored the additions of different foods for any reactions, but didn’t see any obvious ones. These problems have also necessitated a decrease in volume of her feedings, which means increased feedings of smaller volume throughout the day and back to a night time feed. Luckily, our bodies are trained to run at 50% sleep capacity.
Our hope was that the decreased volume would allow things to settle (there is a cycle of vomiting causing increased mucus production for throat protection, then that increased mucus causing more vomiting, and repeat), but so far that hasn’t happened. Our new course of action is to have her retested for allergies. Since the problem seems to be with the amount of congestion in her head, we’re wondering if she hasn’t developed an allergy since being tested (which apparently can happen). A recent visit with the ENT has us increasing her water intake and giving her saline nebulizer treatments twice a day to try to thin out the mucus. We’ve also cut some suspect things out of her diet. We’ll see the allergist next week and go to Cincinnati later in the month. Once all of that information is gathered, we’ll sit down and evaluated the data and see what we can figure out. Honestly, some days it feels like we run a low-rent version of CSI!
Now for her neurologist. J had an MRI last month, the first since she was in the NICU. This was routine and just a picture to give us an indication if anything has changed since her birth. We learned a while back that the pictures are less important than what Julia is doing. Some kids have horrible MRIs but there is very little indication that they have a problem. Others have very slight or mild problems showing on their MRIs but are profoundly impacted; the brain can be a mystical thing. At any rate, Dr. Personality called us with the results. As some of you will recall, we had a bit of a go-around in the NICU and shortly thereafter regarding whether Julia had a brain stem injury in addition to the basal ganglia injury. The neonatologist was convinced that she did because she failed a newborn hearing screening (she got tubes placed post-NICU and all tests indicate that she hears fine). When told the neonatologist's opinion in our post-discharge visit with him, Dr. Personality strongly disagreed (it is important to note here that he didn’t have the MRI in front of him at this time). Well, needless to say, we were surprised when he called a few weeks ago to say that the most recent MRI showed the basal ganglia injury and brain stem injury…same as before. Cutting to the chase, a “discussion” ensued and, true to his ironic nickname, Dr. Personality was a jerk. While the results really don’t matter all that much, we felt it was the principle of the matter. This situation made it clear to us that we need to shop around for another neurologist. We’ve gotten some good leads from our HIE peeps (one of whom has already dropped Dr. Personality), so we’ll be switching soon.
Julia also got a new therapist on the “team,” a developmental specialist. She also comes to us through Early Intervention and will work with Julia on communication and some fine motor skills. She’s been impressed with Julia’s cognition and feels, as we do, that the main issue is not what Julia understands but what she can express and physically act out. She felt that Julia had a lot of good skills with which to work. We’re very hopeful that we can begin some back and forth communication using the iPad. Julia has good receptive language (she understands directions or statements from us) but doesn’t have much expressive language. That can be very frustrating for her and we believe that we see that frustration sometimes. If and when she does speak, we are convinced that her first word will be “Cooper,” our Golden Retriever’s name. She lights up every time he comes into the room and "talks" to him all the time.
J continues to make slow progress with sitting, crawling and bearing weight on her arms. Motor planning (coordination) is one of the other difficulties for people with cerebral palsy. That is the root of Julia’s difficulties with these milestones. We continue to work on these, but Julia seems most interested in walking. Her PT feels strongly that she will walk, whether that is with assistance or without remains a question. Either way, we’re happy to hear her opinion because she has a great deal of experience and we value her judgment.
So anyway, that’s the haps from the divine Miss J. Hopefully, the next few weeks will bring us some answers and a new game plan for feeding therapy. We appreciate the continued support and words of encouragement of our friends and family.
Hello—is anyone out there? It has been too long since our last update. I’m not even sure anyone’s reading them these days!
It has been a very active few months since our last update. Julia is approaching the 16-month mark, and we can hardly believe it. Gone is our cuddly little infant; these days she’s a big girl, getting too long to hold quite as comfortably as we used to. We are almost at the 20-pound mark, and it cannot come soon enough for any of us. We ALL want Julia out of her infant car seat in the worst way!
So here’s what’s been happening in J’s world over the last few months…
We mentioned last time around that J was scheduled for surgery to remove an overgrowth of granulation tissue in her tummy and to replace her g-tube with balloon with one that is balloonless. She came through the surgery with flying colors and was awake and ready to go home by the time we got to the recovery room. Her surgeon was able to remove almost all of the granulation tissue and the tube replacement went smoothly. What neither he nor her GI doc anticipated was that they would find a silk stitch from her g-tube revision back in February 2010 in the middle of everything. They suspect that it is what actually caused the granulation tissue and, since it’s no longer needed, they removed it. We were so hopeful that once her stomach was better, she would feel better and the retching/vomiting would cease.
Unfortunately, the surgery didn’t even make a dent in her retching/vomiting. In fact, post-surgery, it seemed even worse than it was before. She was throwing up, on average, twice a day, and no one had any answers. Her GI doc, surgeon, and feeding team all started talking about placing a gastrojejunal (GJ) tube. This type of tube looks on the outside just like the tube that Julia current has, except on the inside, a tube would be fed through her stomach and into her small intestine. Because food would be fed at a point further along in the digestive system, we would have to continue feeding her a very broken down formula in small amounts over a long period of time. This type of tube would require J to be hooked up to a feeding pump for the majority of the day.
Not an attractive option, as you can imagine. So we are trying our best to determine the root cause of J’s problems in order to make the most informed decision about how to proceed. Moving to GJ feeds is a big step (in our opinion, backwards) and one that is a last resort when all other options have been exhausted. We don’t feel like we have reached that point just yet. We have an appointment at Cincinnati Children’s Hospital, which has the #1 pediatric GI program in the country, in early May (score!).
In the meantime, we have been researching and trialing a blenderized diet, which mixes real food, vitamins/minerals, and essential fats with a formula/milk base. As J is 16 months old, it is beginning to concern us that she is still on a 100% formula diet. We began adding pureed baby food to J’s formula about a month ago, and after a week or so, magically the retching and vomiting stopped! She is still refluxing some but nothing like before. Now that about 20% of her feeding is real food, she is able to tolerate a larger volume in about the same amount of time and she has less mucous (and is therefore less junky). It’s really been a pretty amazing turnaround. Incidentally, the feeding team at Cincinnati has an article being published next month in the Journal of Enteral and Parenteral Nutrition all about using a pureed diet to reduce retching! I met with the nutritionist at the local Children’s Hospital last week and she is putting together a recipe for a 100% blended diet that we will hopefully begin implementing next week.
We are so excited to be seeing improvements in this area as it has been frustrating and discouraging to watch J struggle for almost a year now. We feel with each passing day that the potential for oral feeding slips further and further away because we have had to let that focus fall by the wayside in favor of addressing her more immediate problems. Her feeding team tells us that she will not lose the skills she’s gained and that they have taught children much older than J to eat. But, some of the literature on feeding therapy contradicts this, saying that time is not on our side if we hope to teach J to eat, that the older she gets, the more difficult it will become. So the sooner we can get these issues under control, the better.
Developmental Pediatrician & Genetics Testing
In other news, J saw a developmental pediatrician in early January who put her at 3-5 months of age developmentally. That was a bit of a punch in the stomach as we had thought her developmental age was slightly higher, particularly in the areas of cognitive and social development. The developmental ped, also a geneticist, referred J for genetic testing just to rule out any sort of genetic issues that may have impacted the way in which she was born. So we saw a geneticist the following week. It is safe to say that we have not had such a distressing physician encounter since J was in the NICU. Upon physical examination, this doctor felt that J had a number of potential markers for a variety of different syndromes that may or may not be impacting her development. I won’t bore you with the details, but suffice it to say, I received a laundry list of physical abnormalities this doctor saw in little J.
So after being told all of this, I collected my beautiful (and apparently genetically malformed) little girl in my arms and walked like a zombie over to the lab to have her blood drawn for the testing. I was speechless. I couldn’t believe that after all we’d been through, now we were being presented with another layer of complexity. But, as I processed what the geneticist had told me, I began to feel deep in my gut that she was wrong. In fact she couldn’t be more wrong. In my heart, I believe that J was perfectly formed and healthy prior to my labor and delivery. And so I began to just trust my gut and I stopped worrying about what the genetics tests might reveal. The genetic counselor told me that it would probably be a month or longer before we received the results, so somehow, I pushed it to the back of my mind. But, within 3 weeks, I received a call from her letting me know that the test results were...NORMAL. There was no indication whatsoever that anything was genetically wrong with J. Even though I knew that to be the case, what a relief!
We have been through yet another nurse since our last update, bringing the total number of caregivers for J to 3 in under a year. We thought we had a replacement last week, but that nurse never showed up on her first scheduled day. So we are back at square one and waiting for 2 agencies to find a suitable candidate.
Grandma Hundley has been kind enough to take care of J for the last 2 weeks so that Vince and I could continue to work. This week Vince is going to be caring for J the first part of the week and then I will take her the last 2 days of the week. No idea what we’ll be doing for childcare the following week—we function on a week-by-week basis these days.
This is a particularly difficult aspect of living with a special needs child. There are no daycares in our area for children like J. Hiring someone privately (like a nanny) is expensive, and finding someone who has special needs experience is like searching for a needle in a haystack. Nurses are okay, but they can be unreliable and they tend to be less interested in doing J’s therapies and giving her the TLC we’d like to see her caregiver provide. They are more focused (and rightly so I suppose) on her g-tube feedings, nebulizer treatments, medication administration, etc. We have yet to find an adequate solution and continue to hope that Mary Poppins, RN, will magically appear on our doorstep one of these days…
J made her second trip to in March to follow up with Dr. Christine Roman on her CVI diagnosis. J wowed her with her amazing progress since August, and Dr. Roman is very optimistic that we can get J to a highly functional level of vision. Dr. Roman’s husband, a neonatologist at West Penn, sat in on the session and had nice things to say about J. As has been the case with several medical professionals who have encountered J, he was quite surprised to see her functioning as well as she does given what he had read in her NICU discharge summary. Once again, we were reminded of how severe her brain injury really was and how far she has come despite her questionable beginning. We are at once proud of all that she has accomplished and grateful for the second chance she’s been given, yet anxious about how far she can possibly progress given the fact that she did start life so far behind the curve. We have come to understand that when people tell us J is doing great, it means she is doing great relative to a child in her circumstances. We know that doing great doesn’t mean she’s going to “get better” or lead a normal life free of challenges. She’s not likely to catch up with her peers, and that is still tough to swallow. It probably always will be. But, we do find a great deal of satisfaction in the knowledge that she is amazingly resilient and determined and we know that these traits will serve her well in life regardless of its circumstances.
There have been some fun times for J over the last few months.
She now has 2 teeth! Okay, that’s not really been fun for her, but we’re sure happy about it after 15 long months of waiting.
And she FINALLY got her stander last month after 6 months of waiting. We think it has already helped to improve her trunk control. She is still not sitting unsupported, but she actually really enjoys standing at the couch and reaching for her toys (with some extra support from Mom and Dad of course). She’s getting pretty good at rolling. We don’t actually see her do it all that often, but she manages to get herself across the room and wedged under the couch or coffee table whenever we step away for a few seconds so we’re pretty sure that she’s getting from Point A to Point B somehow.
J went to her first birthday party in February—her friend Leila turned 3! She visited friends in Pittsburgh in March, and hung out with her buddies Zach, Willy, and MQ last weekend. She also got a Seat 2 Go, which is kind of like a booster chair with extra support so now we can all go out to breakfast without wondering if she’s going to have a meltdown in the car seat or if one of us is going to have to eat with one hand while holding a squirmy worm with the other. Should improve our quality of life immensely. Now if only we could find a good solution for grocery carts…
Those are pretty much the highs and lows of the last few months in J’s world. Things were looking pretty bad up until we started trialing the blenderized diet. Now we are more hopeful that we can actually get her GI issues under control, which will improve all of our lives a great deal. I would honestly like to start updating this site more often, if for no other reason than these marathon updates are tiresome for you and for me! If you are still with us on this journey, we thank you for your continued interest in and good wishes for J’s life.
It has been some time since our last update. What can we say—life is pretty hectic around the Brooks household these days. In the interim, a number of folks have asked how they can get notifications when updates are posted to the site. To do this, click on "ask to be a member" at the top of the screen, and you will receive emails whenever new stuff is added here. Or, you can just email me at firstname.lastname@example.org and I can add you to the list!
So, in brief, J celebrated a number of firsts—her first birthday, her first Thanksgiving (in conjunction with making her first trip to Halifax, VA), and her first Christmas AT HOME. She also made her first trip back to the NICU to visit a few of the nurses who took such great care of her and the neonatologist on duty the night J was born. And, she had her first visit with Santa. He made a special trip just to spend some time with her.
For Christmas, J scored a sweet jumperoo, which was approved for use by her PT…as long as she’s wearing her AFOs (ankle-foot orthoses, aka braces). She really likes bouncing around in it, and it’s nice to see her enjoying vertical freedom for a change. She’s still pretty unsteady as she continues to work on building those trunk muscles, but fortunately the seat keeps her from flopping around too much. She likes bouncing on her legs and pulling on all of the toys. We like that she has more freedom, albeit in 15-minute increments, and that she is building leg and trunk strength and control.
J also got an iPad for Xmas. Lest anyone think that we are spoiling the little one, it is strictly for therapeutic purposes. There are lots of cool apps that can help her improve her vision, language, and fine motor skills. It also helps in working on her gross motor skills as she will actually lay on her side or lift her head when on her belly to activate it. There’s actually a blog dedicated to using the iPad to help children with developmental delays and disabilities: http://babieswithipads.blogspot.com/. FYI, J’s favorite app is Peek-A-Boo Barn!
Sadly, the last couple of months have not been all fun and games for J. Reflux continues to plague her, and as a result, she is now getting 3 bolus feedings each day with an overnight feeding from about 9:30 p.m. to 6:30 a.m. The positive is that this frees our days up a bit more. J is able to get more therapy in, and we are able to get out and about a bit more as a family. The negative is that this has not solved her retching/spitting up/vomiting problem. J has also been experiencing some gastric bleeding since early December. We scheduled an endoscopy with her GI doc, not really expecting to learn much as most every test she has had has given us little information and certainly no answers or solutions.
Much to our surprise, and that of her GI, it turns out that J actually has granulation tissue (or, more correctly, an overproduction of granulation tissue, which is essentially scar tissue) in her stomach. It was likely caused by friction between her stomach lining and the balloon that anchors her g-tube. The tissue is ulcerated, which is the source of the blood we have been seeing. Looks like the plan is for her surgeon and GI to jointly perform another endoscopy (which means putting J under AGAIN) to remove the tissue.
Because the tissue is located where her stomach empties into her small intestine, we hope (as one “hopes” for the lesser of two evils in a situation like this) that the tissue is blocking the smooth flow of food from one area to the next as that might explain the retching/vomiting. Her surgeon will also be replacing her current g-tube with a non-balloon g-tube in the hopes that it will decrease or eliminate the retching. But, we will keep our fingers crossed that these interventions will help.
In other news, J saw her neurologist in December. He was pleased with her progress, noting that the tone in her legs was noticeably decreased and that her social and cognitive development are coming along. Until now, he has been hesitant to make any predictions about J’s future, but this time he did say that she is likely going to be disabled in some fashion. We talked a bit more about an eventual cerebral palsy diagnosis, but he is not willing to make it formal at this time, though he has noted it in her chart to help in getting services for her. We will see him again in 4 months, at which time we will discuss another MRI and EEG to see what’s going on inside that little head of hers.
As we begin this second year of our new life, we cannot help but reflect on all that has transpired over the last year. I think often of how, a little over a year ago, we were consumed with the simpler things in life—which crib to buy, which car seat is the safest, which daycare will have a vacancy open up first… And then in the blink of an eye, all of that ceased to matter and we were thrown into the sort of parenthood for which no one prepares. It has been a difficult year to say the least. We have grieved for the loss of the child we dreamed of and planned for and have struggled, are still struggling, to accept that life is not fair and bad things do indeed happen to good people. We have watched J struggle for 6 months to achieve milestones that the average infant masters in a few days. We have burned through leave, and tested the generosity of our employers, as we scramble to find quality caregivers and get J to the myriad of appointments that now fill our calendars. Life does not feel as safe as it once did, back when we took all of our blessings for granted.
But, even in the midst of all of these things, we have grown as individuals, as a couple, and as a family. We have learned to navigate the (maddening and ridiculous) complexities of Medicaid and the healthcare system. We have learned to trust our gut, to question authority, and to advocate for our child even when it is uncomfortable. We celebrate the little things—the cry that took 5 long weeks to form itself and emerge, loud and strong, the awkward roll from back to front that might as well have been J’s Mt. Everest for all of the effort it took to complete, the uncoordinated up-and-down of a chubby arm that finally responds when asked to “wave”—and we are thankful for the second chance, even with all of its accompanying baggage, that J has been given. And, while we have grown more acutely aware of the fact that J is an outlier among her peers, we have found an amazingly supportive community of parents like us with children like J in the farthest corners of the world who remind us that it’s going to be okay, that life is not over. In fact, it has only just begun.
Julia is in the home stretch of her first year. It simultaneously seems like the blink of an eye and two lifetimes. Change is so gradual that we have to look back at pictures to realize how much things have changed since J arrived on the scene 11 months ago. Though it’s been a couple of weeks since an official weigh-in, we estimate J to be about 17 pounds. Though also not official, she’s probably about 26 ½ to 26 ¾ inches long. If her weight gain continues at the present pace she’ll nearly triple her birth weight by age 1. That’s a really excellent achievement given her feeding difficulties. We remind ourselves that this and other successes are what we need to focus on rather than the struggles. A number of struggles have already become successes, and we hope that many more will do the same. We’ve also reflected on the fact that, at nearly a year out, we don’t have the same chest-gripping fears that we had in the early months of J’s life. To be sure, we still have daily and profound concerns about what life will bring for her, but we’ve also learned to cope with a lot of situations and emotions.
One of the ever-present concerns of the last few months has been J’s reflux. Though the volume has decreased somewhat, the frequency has increased, and it remains a frustrating problem that is unlikely to disappear soon. Certainly the progress that J is making with sitting up should only help strengthen her core muscles and aid her in controlling the reflux, but that will take some more time to develop. Those muscles must also function in a coordinated way, and that is something that we cannot help J work out—she has to do that on her own. She is doing very well with sitting practice and has even done brief periods solo with the help of a Boppy pillow. J’s physical and vision therapists both feel that she is making significant progress, so much so that her vision therapist increased her visits from twice-a-month to weekly. She wants to capitalize on the gains that J is making. We’ve definitely noticed an improvement in her vision over the last month or so. She makes eye contact much better, can localize to sound, and loves watching Cooper jump around the living room playing with his toys. Her therapists agree that J seems to have age-appropriate cognitive and social responses and that the majority of her difficulties come from motor delays, but those are improving, too.
J’s feeding therapy has been progressing well also, though we did suffer a set back on Thursday. Up until then, J had been getting increasingly frequent “tastes” of baby food (carrots and pears) and was swallowing well. Mom or Dad sometimes got an eyeful after a cough, but by-in-large, she was doing well. “Tastes” consist of a bit of baby food via squirt bottle or special spoon being put on the back of her tongue or in her cheek. We then help her with mouth closure and try to stimulate a swallow reflex. She did so well one day, she had 22 tastes! However, we were forced to reevaluate our game plan on Thursday, when J had a modified barium swallow study.
The test consists of tastes of food of varying thickness that have been mixed with barium. The barium can be seen by X-ray and, thus, the technicians can see how the person is swallowing. J did very well with first two tastes, completely swallowing both. On the third, she became irritated and arched her back. This caused her esophagus to tense up from bottom to top, which resulted in the food coming back up. When it did, she aspirated it into her lungs. Afterward, she did not sound congested or “junky,” which was more of a concern because that is what is called “silent aspiration” and that can be quite dangerous. We, of course, immediately thought about all of the times she’d had tastes or refluxed and how those were potential aspiration events, unbeknownst to us because she exhibited no outward indicators. Thankfully, none have resulted in pneumonia, but we are now concerned about the possibility of lung damage resulting from the aspiration.
While we are extremely disappointed by this result, there are a few things that we have to keep in mind. First, J has redeveloped a pretty good swallow after initially losing her gag/suck/swallow reflex. That is a huge accomplishment. Secondly, the conditions at the swallow study were not ideal. J was being fed by a speech therapist with whom she has not worked before, and the therapist approached her more forcefully and with a larger volume than J is accustomed to. We tried to explain that this is a VERY new skill for J and that she has some lingering negative behaviors associated with oral feeding, that you have to go slowly, help her with lip closure, etc. Add to this the fact that she was strapped into a different type of seat in a strange environment and sandwiched in between two gigantic pieces of X-ray equipment, and you can see why she would be especially upset. While none of this negates the bottom line, which is that J does not consistently protect her airway, we feel that the results might have been slightly more encouraging if she had been approached in a way that is more familiar to her. So, what does this mean? It means that we’ll have to take a step back and refocus on making feeding practice pleasurable. J can still have a taste or two as practice, but we have to be sure that her mood and response are good. We knew that feeding would be a long process, but it was nonetheless disheartening to suffer this setback. Neverthless, we have resolved to move forward, our hopes for future progress supported by the gains she has made in the past.
On the care front, Julia has had a wonderful nurse caring for her at our house for the past month. We decided to use a nursing agency since J qualifies to have that service covered by insurance and her Medicaid waiver. While the first few weeks were difficult– making arrangements, getting assessments, finding the right nurse– we’ve been doing alright since. We are not pleased with the agency itself because of poor communication and a lack of follow-up, but the nurse has been great. She really cares for J and may be able to work with another agency if we decide to contract with them.
One of the difficulties of living with a child in J’s situation is that it can be very limiting socially. We don’t get out much as a family, primarily due to J’s intensive feeding schedule. We feed her every 3 hours, and a “meal” lasts about 1 ½ hours because the feeding goes in over about an hour then she has to be kept as still as possible for an additional 20-30 minutes in an attempt to keep the reflux at bay. Sometimes we’re successful and sometimes we’re not. Then her continuous feeding starts at 8:30 p.m. and runs until 3:30 a.m. So we have to be home by that time each night. But, we are beginning to make a good faith effort to spend time together as a family NOT focusing on J’s therapies or feeding. So just the three of us went out to breakfast for the first time last Sunday, and J did great. Because she’s not sitting up by herself yet, we had to take her highchair, which was a little awkward. But the smells, sights, and sounds of Kuba Kuba kept J occupied and she had a great time. The change of scenery was really good for all of us, and it was nice to do something “normal.”
So, what’s on tap? We’re currently trying to find a pool that J can use for some aquatic therapy. That’s been tougher than it sounds, but we keep trying because we’ve heard from numerous sources that the water will be great for J’s core strength and the high muscle tone in her extremities. We’ve reached out to a couple of area therapists and institutions for some guidance on this. Perhaps we’ll just put in a hot tub!
We plan on making J’s actual birthday a family affair. If we’re being honest, the anniversary of her birth will be bittersweet for us, so we think it will be best to keep the gathering intimate and low-key. We do plan, however, to celebrate J’s 1.5 in the early summer. That, we hope, will be a big outdoor gathering, but the planning on that has just begun. More on that later.
J’s first Thanksgiving will be spent at Grandma and Grandpa Hundley’s. It will be J’s first visit to Mommy’s hometown, too, so we’ll have to take her to see the sights. Christmas will be at home this year. We’ll probably have some visitors, and J will be getting a special visit from one of Santa’s helpers, who’ll come to her via Reading, PA. It will probably be wise for him to bring an extra red suit because J has the tendency to…ahem…mark her territory. I think J is Latin for “she who no diaper can contain.”
We will surely be posting some more pictures soon. Thank you all for the continued well-wishes and words of encouragement. This year would have certainly been a lot harder if it weren’t for the kindness you all have shown our family. May you all have a peaceful and restful Thanksgiving filled with food, family, and friends. We will certainly be giving thanks this year for all of you… and for little J.
Ten months. Wow. As long as 2010 has seemed, in some respects it has seemed to fly by. A good deal has gone on since our last post (as it normally does). First off, we parted ways with J’s nanny in early September. Childcare has been an issue over the last month or more, but both of J’s grandmas have been huge helps on that score. We don’t know what we would have done without them. We also don’t know what we would do without such understanding employers. Both of our jobs have been very flexible with days off and alternate schedules. I guess it really does “take a village…”
Julia is still struggling with reflux. She’s had numerous tests and the most likely reason has to do with low muscle tone in her trunk. Unfortunately, that means there isn’t much that we can do about it except work on strengthening her core. She’s doing well with sitting, but there’s no guarantee that she'll be able to improve her tone or, if she does, how long it will take. We’re encouraged so far, but like in all things, we don’t have assurance of any particular outcome. We remain hopeful.
In order to come to the conclusions about J’s reflux, she had to go through a couple of unpleasant tests, spending a night in the hospital for one. As nice as the folks at St. Mary’s were to us while J was in the NICU, we weren’t too excited to be back for a stay. Julia had a rough night with that test because it required her to have a small tube down her nose into her esophagus. The irritation from that ultimately caused her to have a difficult vomiting spell overnight. Thankfully, she was okay, but she scared the daylights out of Mommy.
To deal with J’s reflux, we’ve had to adjust her feeding schedule and it’s been a significant change for us. She now gets a lower volume 5 times during the day over the course of an hour. From 8:30pm to 3:30am, she gets a larger volume via feeding pump. That requires Mommy and Daddy to take shifts tending to the overnight feed. Curiously, J has no trouble with reflux while sleeping, hence the larger overnight volume. It’s surprising what you can get used to. While it’s still no picnic going into work every morning, we've gotten somewhat used to interrupted sleep. We’ve opted for this scenario to avoid switching J’s G-tube to a GJ-tube. That type of feeding tube goes into the small bowel and can only be used with a continuous feed (because small volume is needed). In other words, J would be hooked to a feeding pump 24-hours/day. There are a number of issues involved with that, so we’ve tried to avoid it at all costs.
Speaking of work, Kelly is now working 3 days a week so that she can spend 2 days home with J. While it's not feasible for one of us to quit working, we do want to maximize the amount of time that one of us can spend with her so that we can maximize her progress in this first year. Right now, J has a nurse coming by 3 days a week to provide her care. That isn’t the ideal situation as far as we’re concerned, so we’re still on the look out for a nanny. Nurses require a lot less background on the medical issues, but there are some downsides that come with using a private duty nurse. For the time being, we’re trying to make the best of the options available to us.
Even with her reflux issues, Julia has shown improvement with her swallowing and protection of her airway. The fear of aspiration is always lurking, and we’ve been very luck so far. She has had a few tastes of thickened apple juice in feeding therapy and at home. She is not 100 percent sold on eating by mouth yet, but she did swallow several tastes, which thrilled her speech therapist…and us, too!
J had temporary use of a stander since our last update. A stander is a piece of equipment that J gets strapped into that allows her to put weight on her legs, which helps with bone development in her legs. We’re working with the equipment rep and J’s physical therapist to get J one of her own (they’ve had to take the demo stander back), but the insurance companies still consider them “experimental equipment,” despite the fact they they’ve been in use for decades. J wasn’t wild about hers but got significantly more agreeable when it was coupled with some TV.
Julia surprised us with her first laugh in September. She’s a rather ticklish girl and gave Mommy a couple of good belly laughs. We’re also pretty sure that she’s beginning to mimic things that we say to her. For instance, if you give her a kiss and say “thank you,” she’s give you a two-syllable gibberish response (“goo goo”). Also in September, J got some AFOs (ankle foot orthotics) to help keep her feet in the correct position. These should also help with J’s tendency to arch her back. Her PT told us that arching begins with the feet, so over time they should help decrease instances of arching when irritated. The AFOs will also help J with sitting. She is still working on core strength and balance, but has sat on the floor unassisted for almost 10 seconds a couple of times.
Also since our last update, Julia had her first sleepover. She stayed at Granny T’s while Mommy and Daddy took some much needed R&R time in the mountains. Everything went great and that was a big relief for nervous parents. J got to spend some time with Uncle Todd, Cousin Donna, Cousin Lois, and her friend Irene. She enjoyed the company and always has fun visiting Granny T.
Our girl keeps growing. She is now 26 ¼” long (10th percentile) and weighs 15 lbs. 13 oz. (3rd percentile) She is gaining weight at a good pace for her overall size. Julia is still undersized for her age, but then again, so are we. Her head is also growing at a good rate (now 17” which is 20th percentile) which is a good indicator of brain growth, a very positive sign.
Julia’s got a new ENT doc, and we’ve already gotten a lot of good information from her. She immediately scoped J to get a look in her throat. While that wasn’t pleasant for J, it was something her other ENT never did and it gave us a lot of good info to go on. The doc recognized significant post-nasal drip, which would explain some of J’s congestion. She also saw Julia swallow several times with the scope and was very pleased. After using some nasal medication and a saline rinse, we’ve already noticed improvement in the overall struggles with head congestion. The ENT also felt that J would be a good candidate for a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) study in the future. She still needs to improve her swallowing more, but that test will give us specific information on which muscles are and aren’t working internally. From there, we can take a more targeted approach to feeding/swallowing.
It’s been a stressful couple of months trying to juggle our schedules and find daily care for Julia. Like I said earlier, we’ve been incredibly lucky that family and friends have stepped up and helped out. We don’t know what we would have done without them.
We’re switching to shutterfly.com for J’s journal so that we can post more pictures (caringbridge limits us to 51 total). Mommy got a new camera, so expect a lot of glamour shots! We’re not finished adding pics and info to shutterfly.com and will do more as time allows.
Our best to you all.
Vince (Ted), Kelly & Julia